Re: No One Understands or wants to talk to you and it hurts

[Guest guest]

Hi Ann I know what you mean that no one wants to talk. When I am out and about I see a little kids staring and wondering that is up my nose. I want to tell them it is OK to ask questions but you see there dad telling them something and they look away. It is hard to talk to the wife as it starts her crying. Just tonight out of the blue she said that she can't make it on her own with out me. She said she could not live without me and thinks she will follow me soon after. The problem is, you take the hose off my face and I look like any other overweight and bald 57 year old. We just don't look like we are on death beds It will be six years this August since diagnosed and 2 year on o2 24/7 in August. So I am hanging in there. P in Illinois happyyellowroses wrote: No one wants to talk to me about anything. I think they are afraidas I might tell them the doctor said I have 2-4 yrs. to live.Easter Sunday dinner with my Mom and 7 bothers and sisters and my children and grandchildren. All they tell me is "just rest". Oh they ask me as they hug me,"how are you doing?"and I say "Hanging in there" and that's it.I am getting to the point I don't want to leave the apartment. I livealone as I am widowed. I went to Easter Vigil Mass and have a bruised, swollen blood vessel on my leg from my oxygen hitting it, as least that is all I can think of that caused it. It hurts to walk on the leg, but did not say a word as I don't want to be

complaining.I cannot put the liquid oxygen container in a back pack on rollers as it needs to breathe. !!!!! What are we to do? Hang in there as long as we can Ann

Blab-away for as little as 1¢/min. Make PC-to-Phone Calls using Yahoo! Messenger with Voice.

[Guest guest]

Hey, and Ann: Boy can I relate...I have just had a wonderful time this evening...I was sitting at the table not feeling good and asked Deborah, who is suppose to be my best friend, if she would please go get my oxi meter...well, I took it and my heart rate was down to 46...well, I kinda got a little scared..I took it a couple mins. later and it said my heart rate was down to 23....by this time, I am exremely dizzy and the left side of my face is going numb....I asked her if she would call 911, she did , then I had to go ask her if she would ask this older gentleman that lives here if he would come and get me at the hospital if I was released....then I had to ask her if she would go to the hospital with me....long story short...me by ambulance to the hospital and them two by car...I was feeling so bad....I couldn't hardly move...they both came to the emergency room where I was at and stayed about ten mins and said they would be back in a couple of

mins.....in the meantime I am getting blood gas done and stuff like that...;yes, they had me hooked up to oxygen too...well, somebody came into the room and I didn't pay any attention to what they were doing, because I had a nurse doing something or other to me...anyway, I started smelling something...I asked the nurse, I said, are you wearing perfume? She said no, they had just sprayed some air freshener in there....I told her, you really need to get me out of this room...she said, oh...and left it at that....she left the room, I broke free of the tubes and things and made it out the door...gasping for breath I might add...I couldn't believe they did that...I don't know about you all, but I can't be around that stuff...it burns my lungs and I can't breathe....after I finally caught my breath....I threw a fit on them out in the hallway...I bet you could hear me everywhere...some guy came and took me down to x-ray....i came back and still...where is my best friend at,

I know it had been at least an hour since she and n had left the room...eventually, Deborah shows up...I told her, Thanks a lot for being here for me...and then told her what had happened. I told her if she had been there, she would of seen them spraying that stuff and could of stopped them..and something else I am really upset about....when the ambulance came...Deborah didn't meet them at the door, but n did...crap Deborah just sat there ont he couch...and something else...when I asked Deborah to ask n if he would come and get me at the hospital if they released me, the first thing she said to n was, Barb is sick, will you take me for my ultra sound in the morning...and then told him she had called the ambulance...I couldn't believe it...Man am I stupid or what...I just put Deborah's name on my deed to the house about a week ago...apparently, she doesn't give a crap about anyone, but herself. Second, there I lay on oxygen in the emergency

room and housekeeping sprays air freshener, I don't think those two things chemically mix do they? Does anybody know...because I think that is dangerous to do that. My feelings are so hurt right now...I guess I will quit now, though, I could go on and on. So, and Ann, I definitely know where you are coming from. Barb wrote: Hi Ann I know what you mean that no one wants to talk. When I am out and about I see a little kids staring and wondering that is up my nose. I want to tell them it is OK to ask questions but you see there dad telling them something and they look away. It is hard to talk to the wife as it starts her

crying. Just tonight out of the blue she said that she can't make it on her own with out me. She said she could not live without me and thinks she will follow me soon after. The problem is, you take the hose off my face and I look like any other overweight and bald 57 year old. We just don't look like we are on death beds It will be six years this August since diagnosed and 2 year on o2 24/7 in August. So I am hanging in there. P in Illinois happyyellowroses wrote: No one wants to talk to me about anything. I think they are afraidas I might tell them the doctor said I have 2-4 yrs. to live.Easter Sunday dinner with my Mom and 7 bothers and sisters and my children and grandchildren. All

they tell me is "just rest". Oh they ask me as they hug me,"how are you doing?"and I say "Hanging in there" and that's it.I am getting to the point I don't want to leave the apartment. I livealone as I am widowed. I went to Easter Vigil Mass and have a bruised, swollen blood vessel on my leg from my oxygen hitting it, as least that is all I can think of that caused it. It hurts to walk on the leg, but did not say a word as I don't want to be complaining.I cannot put the liquid oxygen container in a back pack on rollers as it needs to breathe. !!!!! What are we to do? Hang in there as long as we can Ann Blab-away for as little as 1¢/min. Make PC-to-Phone Calls using Yahoo! Messenger with

Voice.

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[Guest guest]

Hi Ann, I also know exactly where you are at. Try checking out walmart.com for a backpack for your oxy. On line they have a Eastport MESH backpack for $9.88. not sure about shipping but I'm sure not much. Walmart carries more than one kind where I live because of school requirements.More than one of these are roller MESH.These should allow the oxy to 'breath'.If you want to talk you can e-mail me and I will always answer. I also have 6 brothers and sisters, a husband,3kids and 6 grandkids. Some may listen , but nowill talk . happyyellowroses wrote: No one wants to talk to me about anything. I think they are afraidas I might tell them the doctor said I have 2-4 yrs. to live.Easter Sunday

dinner with my Mom and 7 bothers and sisters and my children and grandchildren. All they tell me is "just rest". Oh they ask me as they hug me,"how are you doing?"and I say "Hanging in there" and that's it.I am getting to the point I don't want to leave the apartment. I livealone as I am widowed. I went to Easter Vigil Mass and have a bruised, swollen blood vessel on my leg from my oxygen hitting it, as least that is all I can think of that caused it. It hurts to walk on the leg, but did not say a word as I don't want to be complaining.I cannot put the liquid oxygen container in a back pack on rollers as it needs to breathe. !!!!! What are we to do? Hang in there as long as we can Ann

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[Guest guest]

Anne,

I feel your frustration and hopelessness, along

with others here...Joyce, Grey; almost all of you.

I cannot totally feel it with you as I do not

have PF, just a spouse of one. I have not 'walked

in your footsteps' so to speak. But I think that

that I can come close, having been blind for

almost two decades now.

Most people that you encounter mean well; they

just don't know how to deal with your problem, so

that it is comfortable for you and them. They

want to be helpful. You are frustrated; they are

ignorant of just what to do or say. The result is

not much of anything or the wrong words coming

out. After awhile maybe they just don't even come

around. I try and make folks like that more

comfortable with me so that they like to come around.

This is hard to express but hope it helps some.

Bob in Utah

[Guest guest]

Anne,

There is a pull cart that just might work for you;

I bought one for me to haul groceries home. It is

completely open; just a frame with a handle and

wheels. It folds up when not in use, very strong

and light weight. When opened it can hold over

100 pounds. You could wrap a bungee cord around

your O2 cannister and off you go.

I bought mine recently at a Target store, not

online; $30.

Good Luck,

Bob in Utah

[Guest guest]

,

In a perfect world, your family/friends would educate themselves to your disease and be ready to talk to you about it. They don't know how to help you because they don't take time to know. I am being realistic, not mean. It doesn't mean that they don't love you or value you. I believe that they just may not be equipped to deal emotionally with it. It is dissapointing, though.

As Christians we are to bear one anothers burdens. When someone actually comes through and does this, it is the most liberating feeling. It is like a heavy load has been lifted. I have a couple of friends who talk with me and cry with me (and laugh) ....they are extremely helpful and kind to me. But, still some days, I feel so alone in all of this.

Stay strong and take care of yourself. We Care!

Hugs,

Joyce

> No one wants to talk to me about anything. I think they are afraid> as I might tell them the doctor said I have 2-4 yrs. to live.> > Easter Sunday dinner with my Mom and 7 bothers and sisters and my > children and grandchildren. > > All they tell me is "just rest". Oh they ask me as they hug me,"how > are you doing?"> and I say "Hanging in there" and that's it.> > I am getting to the point I don't want to leave the apartment. I live> alone as I am widowed. I went to Easter Vigil Mass and have a bruised, > swollen blood vessel on my leg from my oxygen hitting it, as least that > is all I can think of that caused it. It hurts to walk on the leg, > but did not say a word as I don't want to be complaining.> > I cannot put the liquid oxygen container in a back pack on rollers as > it needs to breathe. !!!!! > > What are we to do? Hang in there as long as we can> > Ann> > > > > >

[Guest guest]

Barb - I'm really sorry that happened to you...I wanted to tell you something about the pulse oximeter that you may not know....it is sensitive to movement and artifact....when you place it on your finger, you need to hold real still....your hands cannot be cold....or it won't read the correct number. Your heart rate could not have been that low or you would not have been talking to anyone. The pulse ox is a great tool to "Trend" your oxygen level. One reading doesn't really tell you anything....and if your heart rate on the meter isn't correct, the oxygen reading isn't correct. I'm sure you didn't feel well and was scared...did you try to lay down? Maybe your blood pressure was low....so put the pulse ox on when you are feeling OK and see what your heart rate is normally....and what your oxygenation is....see how the beeping light keeps time with your heartbeat? That's how you know the reading is right.

I hope you feel better.

--Diane Quinlan dianequinlan@...

-------------- Original message --------------

Hey, and Ann: Boy can I relate...I have just had a wonderful time this evening...I was sitting at the table not feeling good and asked Deborah, who is suppose to be my best friend, if she would please go get my oxi meter...well, I took it and my heart rate was down to 46...well, I kinda got a little scared..I took it a couple mins. later and it said my heart rate was down to 23

[Guest guest]

Barb, I have found that the ox met works best for me if I place the meter and my hand on a table or counter so it will not be moving around. My hands are not as stable as they used to be. Give the meter a chance to stabilize. May take 8 or 10 seconds. If you are in doubt turn it off and try again. These things are not always right. The moisture and temp effect the readings. It is meant as a source to get a random reading of what your body is doing. Don't beleive what it tells you every time. Good luck--------Grey

Re: No One Understands or wants to talk to you and it hurts

Barb - I'm really sorry that happened to you...I wanted to tell you something about the pulse oximeter that you may not know....it is sensitive to movement and artifact....when you place it on your finger, you need to hold real still....your hands cannot be cold....or it won't read the correct number. Your heart rate could not have been that low or you would not have been talking to anyone. The pulse ox is a great tool to "Trend" your oxygen level. One reading doesn't really tell you anything....and if your heart rate on the meter isn't correct, the oxygen reading isn't correct. I'm sure you didn't feel well and was scared...did you try to lay down? Maybe your blood pressure was low....so put the pulse ox on when you are feeling OK and see what your heart rate is normally....and what your oxygenation is....see how the beeping light keeps time with your heartbeat? That's how you know the reading is right.

I hope you feel better.

--Diane Quinlan dianequinlan@...

-------------- Original message --------------

Hey, and Ann: Boy can I relate...I have just had a wonderful time this evening...I was sitting at the table not feeling good and asked Deborah, who is suppose to be my best friend, if she would please go get my oxi meter...well, I took it and my heart rate was down to 46...well, I kinda got a little scared..I took it a couple mins. later and it said my heart rate was down to 23

[Guest guest]

I have a question for you or anyone else out there - has anyone heard about the TGF Beta infusion drug trial??

Kim

Re: No One Understands or wants to talk to you and it hurts

Hi Ann I know what you mean that no one wants to talk. When I am out and about I see a little kids staring and wondering that is up my nose. I want to tell them it is OK to ask questions but you see there dad telling them something and they look away.

It is hard to talk to the wife as it starts her crying. Just tonight out of the blue she said that she can't make it on her own with out me. She said she could not live without me and thinks she will follow me soon after. The problem is, you take the hose off my face and I look like any other overweight and bald 57 year old. We just don't look like we are on death beds It will be six years this August since diagnosed and 2 year on o2 24/7 in August. So I am hanging in there. P in Illinois

happyyellowroses wrote:

No one wants to talk to me about anything. I think they are afraidas I might tell them the doctor said I have 2-4 yrs. to live.Easter Sunday dinner with my Mom and 7 bothers and sisters and my children and grandchildren. All they tell me is "just rest". Oh they ask me as they hug me,"how are you doing?"and I say "Hanging in there" and that's it.I am getting to the point I don't want to leave the apartment. I livealone as I am widowed. I went to Easter Vigil Mass and have a bruised, swollen blood vessel on my leg from my oxygen hitting it, as least that is all I can think of that caused it. It hurts to walk on the leg, but did not say a word as I don't want to be complaining.I cannot put the liquid oxygen container in a back pack on rollers as it needs to breathe. !!!!! What are we to do? Hang in there as long as we can Ann

Blab-away for as little as 1¢/min. Make PC-to-Phone Calls using Yahoo! Messenger with Voice.

[Guest guest]

No, I haven't heard of it Kim. Where is it suppose to be going on at? Keep me informed if you find out anything. I would appreciate it. BarbKim L Jelen wrote: I have a question for you or anyone else out there - has anyone heard about the TGF Beta infusion drug trial?? Kim Re: No One Understands or wants to talk to you and it hurts Hi Ann I know what you mean that no one wants to talk. When I am out and about I see a little kids staring and wondering that is up my nose. I want to tell them it is OK to ask questions but you see there dad telling them something and they look away. It is hard to talk to the wife as it starts her crying. Just tonight out of the blue she said that she can't make it on her own with out

me. She said she could not live without me and thinks she will follow me soon after. The problem is, you take the hose off my face and I look like any other overweight and bald 57 year old. We just don't look like we are on death beds It will be six years this August since diagnosed and 2 year on o2 24/7 in August. So I am hanging in there. P in Illinois happyyellowroses wrote: No one wants to talk to me about anything. I think they are afraidas I might tell them the doctor said I have 2-4 yrs. to live.Easter Sunday dinner with my Mom and 7 bothers and sisters and my children and grandchildren. All they tell me is "just rest". Oh they ask me as they hug me,"how are you

doing?"and I say "Hanging in there" and that's it.I am getting to the point I don't want to leave the apartment. I livealone as I am widowed. I went to Easter Vigil Mass and have a bruised, swollen blood vessel on my leg from my oxygen hitting it, as least that is all I can think of that caused it. It hurts to walk on the leg, but did not say a word as I don't want to be complaining.I cannot put the liquid oxygen container in a back pack on rollers as it needs to breathe. !!!!! What are we to do? Hang in there as long as we can Ann Blab-away for as little as 1¢/min. Make PC-to-Phone Calls using Yahoo! Messenger with Voice.

Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.

[Guest guest]

We just heard about it from our DR @ Mayo - MN - there is 3 groups that get different doses - the 1st group is done - they going to be starting the 2nd group - 25 people - 5 people from 5 different locations - don't know too much more right now - waiting to hear more from the DR.

Kim

Re: No One Understands or wants to talk to you and it hurts

Hi Ann I know what you mean that no one wants to talk. When I am out and about I see a little kids staring and wondering that is up my nose. I want to tell them it is OK to ask questions but you see there dad telling them something and they look away.

It is hard to talk to the wife as it starts her crying. Just tonight out of the blue she said that she can't make it on her own with out me. She said she could not live without me and thinks she will follow me soon after. The problem is, you take the hose off my face and I look like any other overweight and bald 57 year old. We just don't look like we are on death beds It will be six years this August since diagnosed and 2 year on o2 24/7 in August. So I am hanging in there. P in Illinois

happyyellowroses wrote:

No one wants to talk to me about anything. I think they are afraidas I might tell them the doctor said I have 2-4 yrs. to live.Easter Sunday dinner with my Mom and 7 bothers and sisters and my children and grandchildren. All they tell me is "just rest". Oh they ask me as they hug me,"how are you doing?"and I say "Hanging in there" and that's it.I am getting to the point I don't want to leave the apartment. I livealone as I am widowed. I went to Easter Vigil Mass and have a bruised, swollen blood vessel on my leg from my oxygen hitting it, as least that is all I can think of that caused it. It hurts to walk on the leg, but did not say a word as I don't want to be complaining.I cannot put the liquid oxygen container in a back pack on rollers as it needs to breathe. !!!!! What are we to do? Hang in there as long as we can Ann

Blab-away for as little as 1¢/min. Make PC-to-Phone Calls using Yahoo! Messenger with Voice.

Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.