Sher

April 28, 2009

love the pose -- jill used to pose like that too

good looking girl too

Pink Joyce IPF 3/06 Pennsylvania

Donate Life Listed 1/09 inactive 4/09

www.transplantfund.org---

Subject: Re: SherTo: Breathe-Support Date: Tuesday, April 28, 2009, 4:22 PM

Hi Sher, I thought I answered you. You know what I do is read all the e-mails then go back and answer or comment--WELL

by the time I get through I have said so much to each post (in my head) that I don't ever get my thoughts down on the board..

I know my OD has kicked in.. lol I really think it is just the changes and I haven't kept up with everyone like I want to.

I am really tired these days, I am feeling good and lousy at the same time.. crazy life.

I am loving having Amber with me. She is like sunshine coming in the door every afternoon. I'll attach a picture from this past week-end at the beach with a friend.

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."

Peggy.... I'm going to jump in here ....I sent you a post asking how you are doing...I don't think you saw it. You haven't been posting much. I see a few today but I still want to know how you're doing...

Love both of you gals.

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

Re: Re: Geeta

Thanks Geeta, That is what I thought. The design is nice but NOTHING like your daughter-in- law. ï¿½

Our weather is getting pretty hot also. I will be reading a lot this summer.ï¿½

Take Care of you.ï¿½

Love & Prayers, Peggy

Florida, ï¿½IPF/UIP 2004

"I believe that friends are quiet angelsï¿½who lift us to our feet,ï¿½

when our wingsï¿½have trouble remembering how to fly."ï¿½

Hi Peggy,I hope you are well too,I am doing well except for the fatgiue, it may be due to the heat it is a scorching , humid 38 degrees out here,I am sorry to tell you that there is no remedy for the stain, henna stains are so fast there is no way you can get rid of them. We always are care ful and generally wear old clothes while applying henna.As kids we have had such mishaps and paid for it!!Love youGeetaInï¿½Breathe-Support@ yahoogroups. com, Peggy <pac1773@... > wrote:>> Hi Geeta, Hope you are doing well. I have a question about henna.. My> grand daughter is living with me and went to the beach.> Someone there was putting henna designs on the teenagers. WELL Amberï¿½> has one on her back and it has gotten on her bathing suit and shirt.ï¿½> My question is, is there anyway to get it out of the cloth??> I appreciate your help.. >ï¿½>ï¿½> Love & Prayers, Peggy> Florida, IPF/UIP 2004>ï¿½> "I believe that friends are quiet angels who lift us to our feet,> when our wings have trouble remembering how to fly.">ï¿½>ï¿½> ï¿¼>

April 28, 2009

ï»¿

Amber is so pretty Peggy. All you gals have the pretty gene.

Thanks for the reply. A few words are better then nothing!

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

Re: Re: Geeta

Thanks Geeta, That is what I thought. The design is nice but NOTHING like your daughter-in-law. ï¿½

Our weather is getting pretty hot also. I will be reading a lot this summer.ï¿½

Take Care of you.ï¿½

Love & Prayers, Peggy

Florida, ï¿½IPF/UIP 2004

"I believe that friends are quiet angelsï¿½who lift us to our feet,ï¿½

when our wingsï¿½have trouble remembering how to fly."ï¿½

Hi Peggy,I hope you are well too,I am doing well except for the fatgiue, it may be due to the heat it is a scorching , humid 38 degrees out here,I am sorry to tell you that there is no remedy for the stain, henna stains are so fast there is no way you can get rid of them. We always are care ful and generally wear old clothes while applying henna.As kids we have had such mishaps and paid for it!!Love youGeetaInï¿½Breathe-Support , Peggy wrote:>> Hi Geeta, Hope you are doing well. I have a question about henna.. My> grand daughter is living with me and went to the beach.> Someone there was putting henna designs on the teenagers. WELL Amberï¿½> has one on her back and it has gotten on her bathing suit and shirt.ï¿½> My question is, is there anyway to get it out of the cloth??> I appreciate your help.. >ï¿½>ï¿½> Love & Prayers, Peggy> Florida, IPF/UIP 2004>ï¿½> "I believe that friends are quiet angels who lift us to our feet,> when our wings have trouble remembering how to fly.">ï¿½>ï¿½> ï¿¼>

April 28, 2009

sunny

i am so glad you went to the ER and have a new attitude about everything

keep up the good work

Pink Joyce IPF 3/06 Pennsylvania

Donate Life Listed 1/09 inactive 4/09

www.transplantfund.org---

Subject: Re: SherTo: Breathe-Support Date: Tuesday, April 28, 2009, 1:35 PM

To all Newbies: Here what you get on this site: Love, support, knowledge, understanding, caring, a kick in the butt if you need one, people who know exactly what you are going through. Today and everyday I will start my day thanking the Lord I found this site and the wonderful people who belong to it. Because of them I am no longer drowning in self-pity and recrimination but feel like I have started a new chapter in my life called "Take charge of and care of Sunny". No more guilt because I am sick. Not my fault! Love yourself, treat yourself as something precious and treasure each day. It gets better, even if not physically, emotionally.

Mama She, I do love you and your attitude. Not a lot of folks can get me thinking about what nonsense is going through my head but you did. You, along with Bruce, Beth and the others are the reason I went to the ER and in their words "It's a good thing you came in when you did." My body was in a very bad downward spiral. No, they did not give me any diagnoses other than severe impaction, vitamin deficiancy, etc... They advised me to seek out my GI and Rheumy immediately. I have already made the appointments. We have insurance but it only pays 80% of ER plus there is $150 co-pay but hey like Bruce (I think) said they have to see me even if I don't have the money. Last night I just said "Sorry, can't pay today, can you please bill me." I was amazed at how easy going they were about it. Now I won't be so reluctant to go to the ER or run around trying to borrow the

money before I go. What a blessing! Today my body is still giving me fits but I would be dancing if I could. I feel like I have a second chance to get my medical problems straightened out; right this time. Giving up WAS not and NEVER is the answer! I am woman, hear me roar instead of whimper. Yes, I know there will still be days like that. Didn't mama say so? But thanks to ALL OF YOU I will go forward stronger. So, from my heart, thank you Sher, Jack, Bruce, Joyce, beth, Beverly and all the ones I can't bring to mind right now. Hugs back too all of you and pats on the back for your strength of character and heart.

Sunny, PF 09, CAN 09, etc..., Idaho

From: Sher Bauman

Sent: Tuesday, April 28, 2009 10:15 AM

To: Breathe-Support@ yahoogroups. com

Subject: Re: Sher

Sunny.... I am so relieved to find your post this morning saying you went to the ER! And I'm glad you're a 'little bit happy' too...

I do get the picture of the problems you were having...thus the urgency to go to ER.

Do you not have any insurance to cover hospitalization. ..especially under 'emergency admittance'?

I truly did not know (obviously) that Lupus makes it harder to get an IV in. Thanks for the information. My grmother/mother both had Lupus and they never mentioned it. Of course that was many years ago.

I get the same put-off. Our income is barely above poverty level but it's still too much to qualify for the help I need. I understand the battle between finance/needs. Each Govt program has it's own guidelines and most always we fall between the cracks.

I understand too about self esteem being tied into what we 'do'. I battled with that for about 3 years after I had to stop working....If I didn't work I thought I wasn't worth anything. Of course now I know that is just not true. For you either.

We have value, worth and dignity no matter what we do or don't do.

Truly, you and I are not the only ones who are living tight. There are others here on the board who have financial problems too.

So did you come home knowing what is causing what you are going through?

Your new resolutions sound just great.

Keep on keepin' on Sunny.

hugs

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

Update after pulmo doc - hate to even call him a doctor

Hi Everyone,

Just got home from pulmo dude. Refused to let me do 24 hour oximeter! My O2 at night is dropping to 83% so will go on night oxygen. So anyway I don't have IPF any more. Now it's just PF because they found out why my lungs are scarring so badly and why I can't breathe. I have Chronic Aspiration Neuritis (spell incorrectly I am sure). I am aspirating so much stomach contents that it is and has been scarring my lungs badly that's why I am down to 40% capacity. Pulmo doc says there are only two treatments: Raglan (which I am extremely allergic too) or surgery. He has referred me to gastro guy for surgery which in his words "is very intense". Anyone ever had or know anyone who has had this type of surgery. My gastro dude isn't back until Monday and I really want to know if they are going through my abdomen. or throat or where? I am so upset. How can there be only

one drug to treat this? There are a hundred to treat everything else. Normal stain of stomach oil in lungs is about 55. Mine was 142. Doc says without the surgery my lungs will continue to deteriorate and I will get worse and worse. Said the pain in my chest is esophageal spasm and it hurts like a very bad word but there is nothing he can do about it. That's gastro guy's department. Believe it or not pulmo doc said "I just diagnose this I don't treat it." Go see gastro guy and come back to me in 2 months. & *^ & **** & ^^%^ & **!!!!! And that's how I feel about all of it.

Sunny, PF '09 & whatever else could possibly be wrong with the human body, Idaho

April 28, 2009

Joyce,

I made the mistake when I was first diagnosed with Lupus and told I couldn't work anymore of contacting an attorney off the TV. I won't say which but it was a huge mistake. Everyone else at my Lupus support group went straight to SS and got approved within 6 months or less. I on the other hand have been waiting over 3 years. I have been through 2 denials and am waiting on the judge which the attorney tells me will be within the next 12 months and 97% chance of approval. I wish, I wish someone had warned me earlier and I would have my SSI right now.

Sunny

From: Joyce T Rosenberg

Sent: Tuesday, April 28, 2009 2:45 PM

To: Breathe-Support

Subject: Re: Sher

Sunny

social security disabilty income as far as i know has nothing to do with other insurance

as long as you worked a certain amount of quarters you should be able to collect after prooving your disabilty.

have you been on the social security disabilty website?

have you contacted the social security office near you?

you should be able to do this by yourself

there is a lot of paper work to do and gather lots of information for them

once that is done, i made an in office appointment, some people in this support group had telephone appointments

my pulmonary doc said that when people are on o2, the disabililty income is usually granted

go directly to the social security office or web site, by pass other people [lawyers, etc], get the paper work, make the appt -- in person or via telephone -- and see what happens

the deposit was in my bank account before I even received a notification letter, they counted back 6 months, so there was a lump sum

the only problem is the 2 year wait for medicare to kick in

but that's another story

Pink Joyce IPF 3/06 Pennsylvania

Donate Life Listed 1/09 inactive 4/09

www.transplantfund.org--- On Tue, 4/28/09, rpickel1 (AT) msn (DOT) com <rpickel1 (AT) msn (DOT) com> wrote:

From: rpickel1 (AT) msn (DOT) com <rpickel1 (AT) msn (DOT) com>Subject: Re: SherTo: Breathe-Support Date: Tuesday, April 28, 2009, 2:03 AM

Mama Sher,

You probably won't get this until tomorrow but I am sorry I unloaded on you. We just got back from the ER so I am a little bit "happy" right now. No pain at all! The did an NG tube in my nose down to my stomach and poured in 2 gallons of Ultra Go Lightly. Thankfully they drugged me up really good first. I am now all nice and cleaned out. They were worried because my O2 was low, pulse was too high, potassium was too low, iron was too low; oh well you get the picture. I was terribly dehydrated so I am sure that was most of the problem. When I first got there I had an irregular heart beat but by the time I left everything was pretty settled down. Of course I left with a handful of scripts but I was just thankful to leave because the doctor was insisting that he admit me but I told him that I honestly could not afford it and promised to follow his instructions to the letter and see my doctor tomorrow. Actually won't see GI until Wed. afternoon but close enough. I have to go see my primary because my blood sugar was high. That seems weird since I haven't been eating but I guess it's not unusual. I did want to tell you that Lupus can cause your veins to be very leathery and hard to get a needle in. Last surgery I had they poked me 12 times before finally going in my foot which they hate to do because of infection risk. Luckily this time it was only 6 pokes before they got the IV in. Now, my plan: 1st quit feeling sorry for myself, 2nd get references, recommendations ect... and find a new GP to oversee my total care, 3rd find a new pulmonologist, 4th start taking better care of my body and 5th start opening my mouth and letting doctors know exactly how I feel. I tend to be overawed or scared when I am in their office and don't argue or ask questions. That is going to change now! Thanks to everyone who said ER. It was exactly the right thing to do. When I talked to my GI he told me to go directly to the ER. Sometimes I am very thick headed. Joyce you are exactly right. Rich makes too much money for us to get state help, I am waiting on SSDI and every place I have called for help says no because we have insurance. If we didn't we could get all kinds of help. Seems like they would want to help those that they only had to pay part of the cost. If Rich quit working we could also get tons of help but that will never happen. It seems a shame that in our country the folks who really try are the ones who get shafted. I have a very hard time with the fact that I have to fight for my SSI. I was widowed young with three small daughters but didn't go on welfare. I worked and put myself through college and received a degree in Business Management. I wanted to be able to make enough to give them everything. I ended up as an underwriter for a very large insurer making major money so the loss of the ability to work and bring home a paycheck has been pretty hard on me. That SSDI money is mine. I paid it in for over 20 years and now have to fight to get it. Very sad! But I have realized that I had way too much of my self esteem tied in to my job and paycheck. I have to find the value in myself that has nothing to do with my education and job skills. That is a major part of my depression, feeling worthless and useless but I AM NOT! I am a Saint and Daughter of the King. God loves me and knows exactly what's going on and will pull me through. Goodness I am woozy and rambling so I will shut up for now and go to bed before I fall asleep at the keyboard. Love all of you guys and appreciate your caring and don't mind a bit if I need my backside chewed out to set me straight.

Sunny

From: Sher Bauman

Sent: Monday, April 27, 2009 6:53 PM

To: Breathe-Support@ yahoogroups. com

Subject: Re: Sher

Sunny...oh my goodness. I overstepped my bounds. I apologize to you. Perhaps it helps to 'unload' and it's ok. I understand because I live the same thing. Overwhelming medical bills and Rx that are so high I fell in the donut hole last year and then had to pay 100% for all RX.

I apologize for 'sounding strange' to you. I was feeling great concern for you and yes, trying my best to prompt you to go to the ER for medical attention.

Bruce and MB both said the same thing but perhaps in a more accepting way. I am known for being outspoken. We sometimes don't have time for chit-chat when there is an emergency and I think you do need immediate care. You are worth that.

I do think you are overwhelmed as any of us would be in your same situation and you owe me nor anyone else an explanation of your personal life.

I want good care for you in this post as I did in my last post.

God Bless you.

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

Update after pulmo doc - hate to even call him a doctor

Hi Everyone,

Just got home from pulmo dude. Refused to let me do 24 hour oximeter! My O2 at night is dropping to 83% so will go on night oxygen. So anyway I don't have IPF any more. Now it's just PF because they found out why my lungs are scarring so badly and why I can't breathe. I have Chronic Aspiration Neuritis (spell incorrectly I am sure). I am aspirating so much stomach contents that it is and has been scarring my lungs badly that's why I am down to 40% capacity. Pulmo doc says there are only two treatments: Raglan (which I am extremely allergic too) or surgery. He has referred me to gastro guy for surgery which in his words "is very intense". Anyone ever had or know anyone who has had this type of surgery. My gastro dude isn't back until Monday and I really want to know if they are going through my abdomen. or throat or where? I am so upset. How can there be only one drug to treat this? There are a hundred to treat everything else. Normal stain of stomach oil in lungs is about 55. Mine was 142. Doc says without the surgery my lungs will continue to deteriorate and I will get worse and worse. Said the pain in my chest is esophageal spasm and it hurts like a very bad word but there is nothing he can do about it. That's gastro guy's department. Believe it or not pulmo doc said "I just diagnose this I don't treat it." Go see gastro guy and come back to me in 2 months. & *^ & **** & ^^%^ & **!!!!! And that's how I feel about all of it.

Sunny, PF '09 & whatever else could possibly be wrong with the human body, Idaho

April 28, 2009

Joyce,

I made the mistake when I was first diagnosed with Lupus and told I couldn't work anymore of contacting an attorney off the TV. I won't say which but it was a huge mistake. Everyone else at my Lupus support group went straight to SS and got approved within 6 months or less. I on the other hand have been waiting over 3 years. I have been through 2 denials and am waiting on the judge which the attorney tells me will be within the next 12 months and 97% chance of approval. I wish, I wish someone had warned me earlier and I would have my SSI right now.

Sunny

From: Joyce T Rosenberg

Sent: Tuesday, April 28, 2009 2:45 PM

To: Breathe-Support

Subject: Re: Sher

Sunny

social security disabilty income as far as i know has nothing to do with other insurance

as long as you worked a certain amount of quarters you should be able to collect after prooving your disabilty.

have you been on the social security disabilty website?

have you contacted the social security office near you?

you should be able to do this by yourself

there is a lot of paper work to do and gather lots of information for them

once that is done, i made an in office appointment, some people in this support group had telephone appointments

my pulmonary doc said that when people are on o2, the disabililty income is usually granted

go directly to the social security office or web site, by pass other people [lawyers, etc], get the paper work, make the appt -- in person or via telephone -- and see what happens

the deposit was in my bank account before I even received a notification letter, they counted back 6 months, so there was a lump sum

the only problem is the 2 year wait for medicare to kick in

but that's another story

Pink Joyce IPF 3/06 Pennsylvania

Donate Life Listed 1/09 inactive 4/09

www.transplantfund.org--- On Tue, 4/28/09, rpickel1 (AT) msn (DOT) com <rpickel1 (AT) msn (DOT) com> wrote:

From: rpickel1 (AT) msn (DOT) com <rpickel1 (AT) msn (DOT) com>Subject: Re: SherTo: Breathe-Support Date: Tuesday, April 28, 2009, 2:03 AM

Mama Sher,

You probably won't get this until tomorrow but I am sorry I unloaded on you. We just got back from the ER so I am a little bit "happy" right now. No pain at all! The did an NG tube in my nose down to my stomach and poured in 2 gallons of Ultra Go Lightly. Thankfully they drugged me up really good first. I am now all nice and cleaned out. They were worried because my O2 was low, pulse was too high, potassium was too low, iron was too low; oh well you get the picture. I was terribly dehydrated so I am sure that was most of the problem. When I first got there I had an irregular heart beat but by the time I left everything was pretty settled down. Of course I left with a handful of scripts but I was just thankful to leave because the doctor was insisting that he admit me but I told him that I honestly could not afford it and promised to follow his instructions to the letter and see my doctor tomorrow. Actually won't see GI until Wed. afternoon but close enough. I have to go see my primary because my blood sugar was high. That seems weird since I haven't been eating but I guess it's not unusual. I did want to tell you that Lupus can cause your veins to be very leathery and hard to get a needle in. Last surgery I had they poked me 12 times before finally going in my foot which they hate to do because of infection risk. Luckily this time it was only 6 pokes before they got the IV in. Now, my plan: 1st quit feeling sorry for myself, 2nd get references, recommendations ect... and find a new GP to oversee my total care, 3rd find a new pulmonologist, 4th start taking better care of my body and 5th start opening my mouth and letting doctors know exactly how I feel. I tend to be overawed or scared when I am in their office and don't argue or ask questions. That is going to change now! Thanks to everyone who said ER. It was exactly the right thing to do. When I talked to my GI he told me to go directly to the ER. Sometimes I am very thick headed. Joyce you are exactly right. Rich makes too much money for us to get state help, I am waiting on SSDI and every place I have called for help says no because we have insurance. If we didn't we could get all kinds of help. Seems like they would want to help those that they only had to pay part of the cost. If Rich quit working we could also get tons of help but that will never happen. It seems a shame that in our country the folks who really try are the ones who get shafted. I have a very hard time with the fact that I have to fight for my SSI. I was widowed young with three small daughters but didn't go on welfare. I worked and put myself through college and received a degree in Business Management. I wanted to be able to make enough to give them everything. I ended up as an underwriter for a very large insurer making major money so the loss of the ability to work and bring home a paycheck has been pretty hard on me. That SSDI money is mine. I paid it in for over 20 years and now have to fight to get it. Very sad! But I have realized that I had way too much of my self esteem tied in to my job and paycheck. I have to find the value in myself that has nothing to do with my education and job skills. That is a major part of my depression, feeling worthless and useless but I AM NOT! I am a Saint and Daughter of the King. God loves me and knows exactly what's going on and will pull me through. Goodness I am woozy and rambling so I will shut up for now and go to bed before I fall asleep at the keyboard. Love all of you guys and appreciate your caring and don't mind a bit if I need my backside chewed out to set me straight.

Sunny

From: Sher Bauman

Sent: Monday, April 27, 2009 6:53 PM

To: Breathe-Support@ yahoogroups. com

Subject: Re: Sher

Sunny...oh my goodness. I overstepped my bounds. I apologize to you. Perhaps it helps to 'unload' and it's ok. I understand because I live the same thing. Overwhelming medical bills and Rx that are so high I fell in the donut hole last year and then had to pay 100% for all RX.

I apologize for 'sounding strange' to you. I was feeling great concern for you and yes, trying my best to prompt you to go to the ER for medical attention.

Bruce and MB both said the same thing but perhaps in a more accepting way. I am known for being outspoken. We sometimes don't have time for chit-chat when there is an emergency and I think you do need immediate care. You are worth that.

I do think you are overwhelmed as any of us would be in your same situation and you owe me nor anyone else an explanation of your personal life.

I want good care for you in this post as I did in my last post.

God Bless you.

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

Update after pulmo doc - hate to even call him a doctor

Hi Everyone,

Just got home from pulmo dude. Refused to let me do 24 hour oximeter! My O2 at night is dropping to 83% so will go on night oxygen. So anyway I don't have IPF any more. Now it's just PF because they found out why my lungs are scarring so badly and why I can't breathe. I have Chronic Aspiration Neuritis (spell incorrectly I am sure). I am aspirating so much stomach contents that it is and has been scarring my lungs badly that's why I am down to 40% capacity. Pulmo doc says there are only two treatments: Raglan (which I am extremely allergic too) or surgery. He has referred me to gastro guy for surgery which in his words "is very intense". Anyone ever had or know anyone who has had this type of surgery. My gastro dude isn't back until Monday and I really want to know if they are going through my abdomen. or throat or where? I am so upset. How can there be only one drug to treat this? There are a hundred to treat everything else. Normal stain of stomach oil in lungs is about 55. Mine was 142. Doc says without the surgery my lungs will continue to deteriorate and I will get worse and worse. Said the pain in my chest is esophageal spasm and it hurts like a very bad word but there is nothing he can do about it. That's gastro guy's department. Believe it or not pulmo doc said "I just diagnose this I don't treat it." Go see gastro guy and come back to me in 2 months. & *^ & **** & ^^%^ & **!!!!! And that's how I feel about all of it.

Sunny, PF '09 & whatever else could possibly be wrong with the human body, Idaho

April 28, 2009

Pink....yeah, Medicare kicks in and disability kicks out. One program or the other, not two at once.

But I'm glad to have any financial help....I couldn't work now and sometimes the $$$$ seems to just disappear and of course the majority goes into health care/Rx.

Hope you're doing ok.

I'm doing better....

See everyone tomorrow....

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

Update after pulmo doc - hate to even call him a doctor

Hi Everyone,

Just got home from pulmo dude. Refused to let me do 24 hour oximeter! My O2 at night is dropping to 83% so will go on night oxygen. So anyway I don't have IPF any more. Now it's just PF because they found out why my lungs are scarring so badly and why I can't breathe. I have Chronic Aspiration Neuritis (spell incorrectly I am sure). I am aspirating so much stomach contents that it is and has been scarring my lungs badly that's why I am down to 40% capacity. Pulmo doc says there are only two treatments: Raglan (which I am extremely allergic too) or surgery. He has referred me to gastro guy for surgery which in his words "is very intense". Anyone ever had or know anyone who has had this type of surgery. My gastro dude isn't back until Monday and I really want to know if they are going through my abdomen. or throat or where? I am so upset. How can there be only one drug to treat this? There are a hundred to treat everything else. Normal stain of stomach oil in lungs is about 55. Mine was 142. Doc says without the surgery my lungs will continue to deteriorate and I will get worse and worse. Said the pain in my chest is esophageal spasm and it hurts like a very bad word but there is nothing he can do about it. That's gastro guy's department. Believe it or not pulmo doc said "I just diagnose this I don't treat it." Go see gastro guy and come back to me in 2 months. & *^ & **** & ^^%^ & **!!!!! And that's how I feel about all of it.

Sunny, PF '09 & whatever else could possibly be wrong with the human body, Idaho

April 28, 2009

Pink....yeah, Medicare kicks in and disability kicks out. One program or the other, not two at once.

But I'm glad to have any financial help....I couldn't work now and sometimes the $$$$ seems to just disappear and of course the majority goes into health care/Rx.

Hope you're doing ok.

I'm doing better....

See everyone tomorrow....

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

Update after pulmo doc - hate to even call him a doctor

Hi Everyone,

Just got home from pulmo dude. Refused to let me do 24 hour oximeter! My O2 at night is dropping to 83% so will go on night oxygen. So anyway I don't have IPF any more. Now it's just PF because they found out why my lungs are scarring so badly and why I can't breathe. I have Chronic Aspiration Neuritis (spell incorrectly I am sure). I am aspirating so much stomach contents that it is and has been scarring my lungs badly that's why I am down to 40% capacity. Pulmo doc says there are only two treatments: Raglan (which I am extremely allergic too) or surgery. He has referred me to gastro guy for surgery which in his words "is very intense". Anyone ever had or know anyone who has had this type of surgery. My gastro dude isn't back until Monday and I really want to know if they are going through my abdomen. or throat or where? I am so upset. How can there be only one drug to treat this? There are a hundred to treat everything else. Normal stain of stomach oil in lungs is about 55. Mine was 142. Doc says without the surgery my lungs will continue to deteriorate and I will get worse and worse. Said the pain in my chest is esophageal spasm and it hurts like a very bad word but there is nothing he can do about it. That's gastro guy's department. Believe it or not pulmo doc said "I just diagnose this I don't treat it." Go see gastro guy and come back to me in 2 months. & *^ & **** & ^^%^ & **!!!!! And that's how I feel about all of it.

Sunny, PF '09 & whatever else could possibly be wrong with the human body, Idaho

April 28, 2009

Sunny...it's always good to take a list of questions/inquiries to the doc... something we learn from the board.

Here's a place where you can advocate for yourself....if a med (such as prednisone) has not been discussed in 3 years....YOU could have brought it up and I'm sure now, you will do so.

Have you contacted the ER doc or someone to let them know you are having problems with eating/pain? No doubt one of the reasons the ER doc wanted to admit you, to follow up.

Sunny, don't let this go unmentioned. It's possible you have a 'kink' someplace after such a serious impaction but check this out too.

Please don't dx yourself or decide what you should or shouldn't do w/o medical input...

You (and everyone) take precautions with this Swine Flu. I see on tonight's news that it is spreading.

I keep a small bottle of waterless hand cleaner in my purse and I will start using it more.

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

Update after pulmo doc - hate to even call him a doctor

Hi Everyone,

Just got home from pulmo dude. Refused to let me do 24 hour oximeter! My O2 at night is dropping to 83% so will go on night oxygen. So anyway I don't have IPF any more. Now it's just PF because they found out why my lungs are scarring so badly and why I can't breathe. I have Chronic Aspiration Neuritis (spell incorrectly I am sure). I am aspirating so much stomach contents that it is and has been scarring my lungs badly that's why I am down to 40% capacity. Pulmo doc says there are only two treatments: Raglan (which I am extremely allergic too) or surgery. He has referred me to gastro guy for surgery which in his words "is very intense". Anyone ever had or know anyone who has had this type of surgery. My gastro dude isn't back until Monday and I really want to know if they are going through my abdomen. or throat or where? I am so upset. How can there be only one drug to treat this? There are a hundred to treat everything else. Normal stain of stomach oil in lungs is about 55. Mine was 142. Doc says without the surgery my lungs will continue to deteriorate and I will get worse and worse. Said the pain in my chest is esophageal spasm and it hurts like a very bad word but there is nothing he can do about it. That's gastro guy's department. Believe it or not pulmo doc said "I just diagnose this I don't treat it." Go see gastro guy and come back to me in 2 months. & *^ & **** & ^^%^ & **!!!!! And that's how I feel about all of it.

Sunny, PF '09 & whatever else could possibly be wrong with the human body, Idaho

April 28, 2009