Re: Thoughts

[Guest guest]

.. I was asked how I

was feeling--early in my neuro(I think) manifestation--I commented on

how tired I felt....and this one lady piped in and said tired?? that's

it??? we all feel that way---no reason to stop.

AAARRRRGGGH, and UUUUUFFFFTTT. My uncle, who lost his son to kidney disease at the age of 48-- had the audacity to ask me when I was going to "get over" this.

If he wasn't such an ass, I'd found a comeback. Someday, I may even call him up with the answer. Then again, I may not-- that would take more energy than I have.

It is so difficult, when you're past exhausted, and still have one more email to answer, or thing to do before trying to climb into bed, or collapse on the couch-- that people can be so insensitive.

This isn't the flu-- there's no 10 days and you'll feel like new. I sure wish for all of us there was.

Darlene said it well-- "when I take my last breathe, and leave this body behind--then I will have all the energy I need, and my health will be restored." (or something close to this.)

I like that idea,

Tracie

[Guest guest]

.. I was asked how I

was feeling--early in my neuro(I think) manifestation--I commented on

how tired I felt....and this one lady piped in and said tired?? that's

it??? we all feel that way---no reason to stop.

AAARRRRGGGH, and UUUUUFFFFTTT. My uncle, who lost his son to kidney disease at the age of 48-- had the audacity to ask me when I was going to "get over" this.

If he wasn't such an ass, I'd found a comeback. Someday, I may even call him up with the answer. Then again, I may not-- that would take more energy than I have.

It is so difficult, when you're past exhausted, and still have one more email to answer, or thing to do before trying to climb into bed, or collapse on the couch-- that people can be so insensitive.

This isn't the flu-- there's no 10 days and you'll feel like new. I sure wish for all of us there was.

Darlene said it well-- "when I take my last breathe, and leave this body behind--then I will have all the energy I need, and my health will be restored." (or something close to this.)

I like that idea,

Tracie

[Guest guest]

Janet, be prepared for many more comments by "friends" and relatives. You may mention that you are finding it difficult to get up from chairs, etc., and people will say, "oh, yes, old age is catching up with me, too!" or something like that. This is when you have to rock up & down 2-3 times to get enough momentum to get off the sofa. I enjoy being able to say, innocently, "Oh, I'll bet you've had to get one of those monkey bars for your toilet. I don't know what I'd do without mine." I try not to mention any symptoms to my mother, because either she or great-aunt Okal or a neighbor she had 40 years ago has the same thing & maybe they have the same disease I have. Of course, that is a possibility, but I don't think so! Well, maybe the neighbor, because I never met her.

BTW, don't be reluctant to get "monkey bars" for the toilet, or a handrail for the tub. I had found myself using the t.p. holder & the counter to get off the toilet & wishing I had something to help me get out of the tub. These are very inexpensive. I had the toilet bars from when my brother was so sick and I got the tub bar from Lowe's. I was able to install them myself with basic tools.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: thoughtsDate: Wed, 28 Sep 2005 03:10:30 -0000I have decided that I am an optimist---or maybe grieving (one of thestages is denial). I might have a good day or a few days and I canconvience myself that I am getting better and that with a little morewill power and positive attitude I will no longer be sick. And for amoment I can ignore all my symptoms and pretend all is well. The onlyproblem is that I pay for this optimistic outlook later. I have beenable to "hide" the disease, but lately people(even strangers) areasking if I am O.K. This reminds me of a comment that a "friend" made. I was asked how Iwas feeling--early in my neuro(I think) manifestation--I commented onhow tired I felt....and this one lady piped in and said tired?? that'sit??? we all feel that way---no reason to stop. That comment hasbugged me ever since and I was grateful to know that others look finebut inside feels like they are melting.Maybe I am not a true optimist......just a survivalist and that iswhat I need right now.Janet~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Janet, be prepared for many more comments by "friends" and relatives. You may mention that you are finding it difficult to get up from chairs, etc., and people will say, "oh, yes, old age is catching up with me, too!" or something like that. This is when you have to rock up & down 2-3 times to get enough momentum to get off the sofa. I enjoy being able to say, innocently, "Oh, I'll bet you've had to get one of those monkey bars for your toilet. I don't know what I'd do without mine." I try not to mention any symptoms to my mother, because either she or great-aunt Okal or a neighbor she had 40 years ago has the same thing & maybe they have the same disease I have. Of course, that is a possibility, but I don't think so! Well, maybe the neighbor, because I never met her.

BTW, don't be reluctant to get "monkey bars" for the toilet, or a handrail for the tub. I had found myself using the t.p. holder & the counter to get off the toilet & wishing I had something to help me get out of the tub. These are very inexpensive. I had the toilet bars from when my brother was so sick and I got the tub bar from Lowe's. I was able to install them myself with basic tools.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: thoughtsDate: Wed, 28 Sep 2005 03:10:30 -0000I have decided that I am an optimist---or maybe grieving (one of thestages is denial). I might have a good day or a few days and I canconvience myself that I am getting better and that with a little morewill power and positive attitude I will no longer be sick. And for amoment I can ignore all my symptoms and pretend all is well. The onlyproblem is that I pay for this optimistic outlook later. I have beenable to "hide" the disease, but lately people(even strangers) areasking if I am O.K. This reminds me of a comment that a "friend" made. I was asked how Iwas feeling--early in my neuro(I think) manifestation--I commented onhow tired I felt....and this one lady piped in and said tired?? that'sit??? we all feel that way---no reason to stop. That comment hasbugged me ever since and I was grateful to know that others look finebut inside feels like they are melting.Maybe I am not a true optimist......just a survivalist and that iswhat I need right now.Janet~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Janet, be prepared for many more comments by "friends" and relatives. You may mention that you are finding it difficult to get up from chairs, etc., and people will say, "oh, yes, old age is catching up with me, too!" or something like that. This is when you have to rock up & down 2-3 times to get enough momentum to get off the sofa. I enjoy being able to say, innocently, "Oh, I'll bet you've had to get one of those monkey bars for your toilet. I don't know what I'd do without mine." I try not to mention any symptoms to my mother, because either she or great-aunt Okal or a neighbor she had 40 years ago has the same thing & maybe they have the same disease I have. Of course, that is a possibility, but I don't think so! Well, maybe the neighbor, because I never met her.

BTW, don't be reluctant to get "monkey bars" for the toilet, or a handrail for the tub. I had found myself using the t.p. holder & the counter to get off the toilet & wishing I had something to help me get out of the tub. These are very inexpensive. I had the toilet bars from when my brother was so sick and I got the tub bar from Lowe's. I was able to install them myself with basic tools.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: thoughtsDate: Wed, 28 Sep 2005 03:10:30 -0000I have decided that I am an optimist---or maybe grieving (one of thestages is denial). I might have a good day or a few days and I canconvience myself that I am getting better and that with a little morewill power and positive attitude I will no longer be sick. And for amoment I can ignore all my symptoms and pretend all is well. The onlyproblem is that I pay for this optimistic outlook later. I have beenable to "hide" the disease, but lately people(even strangers) areasking if I am O.K. This reminds me of a comment that a "friend" made. I was asked how Iwas feeling--early in my neuro(I think) manifestation--I commented onhow tired I felt....and this one lady piped in and said tired?? that'sit??? we all feel that way---no reason to stop. That comment hasbugged me ever since and I was grateful to know that others look finebut inside feels like they are melting.Maybe I am not a true optimist......just a survivalist and that iswhat I need right now.Janet~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

We can also use the approach of my friend whose father thinks he is sick all the time, but really isn't. (No, he really isn't!) Anyway, she & her brother say that when he dies, they are going to put on his tombstone "I told you I was sick."

Ramblin' Rose

Moderator

From: tiodaat@...Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: thoughtsDate: Wed, 28 Sep 2005 02:38:33 EDT

.. I was asked how Iwas feeling--early in my neuro(I think) manifestation--I commented onhow tired I felt....and this one lady piped in and said tired?? that'sit??? we all feel that way---no reason to stop. AAARRRRGGGH, and UUUUUFFFFTTT. My uncle, who lost his son to kidney disease at the age of 48-- had the audacity to ask me when I was going to "get over" this. If he wasn't such an ass, I'd found a comeback. Someday, I may even call him up with the answer. Then again, I may not-- that would take more energy than I have.It is so difficult, when you're past exhausted, and still have one more email to answer, or thing to do before trying to climb into bed, or collapse on the couch-- that people can be so insensitive. This isn't the flu-- there's no 10 days and you'll feel like new. I sure wish for all of us there was. Darlene said it well-- "when I take my last breathe, and leave this body behind--then I will have all the energy I need, and my health will be restored." (or something close to this.) I like that idea,Tracie ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

We can also use the approach of my friend whose father thinks he is sick all the time, but really isn't. (No, he really isn't!) Anyway, she & her brother say that when he dies, they are going to put on his tombstone "I told you I was sick."

Ramblin' Rose

Moderator

From: tiodaat@...Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: thoughtsDate: Wed, 28 Sep 2005 02:38:33 EDT

.. I was asked how Iwas feeling--early in my neuro(I think) manifestation--I commented onhow tired I felt....and this one lady piped in and said tired?? that'sit??? we all feel that way---no reason to stop. AAARRRRGGGH, and UUUUUFFFFTTT. My uncle, who lost his son to kidney disease at the age of 48-- had the audacity to ask me when I was going to "get over" this. If he wasn't such an ass, I'd found a comeback. Someday, I may even call him up with the answer. Then again, I may not-- that would take more energy than I have.It is so difficult, when you're past exhausted, and still have one more email to answer, or thing to do before trying to climb into bed, or collapse on the couch-- that people can be so insensitive. This isn't the flu-- there's no 10 days and you'll feel like new. I sure wish for all of us there was. Darlene said it well-- "when I take my last breathe, and leave this body behind--then I will have all the energy I need, and my health will be restored." (or something close to this.) I like that idea,Tracie ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Lou you will live on in my heart and mind. Thank you for showing me the way to a full life despite our common disease. You have been like a beacon of light in a very dark place and have drawn me out of the darkness and into the light. Thank you. I love you. Jack79/IPF - UIP/dx06/05 Maine

To: Breathe-Support Sent: Wednesday, February 4, 2009 7:15:38 PMSubject: Thoughts

I Know our thoughts are full for Lou and Pink Joyce today on the eve of their new journeys. God be with us all.It was -5 degrees last night and I stayed out well after my oxygen ran out. I needed to get more checks from the credit union, make them out to pay my bills, shop for food, fill the car with gas and drive to the 24 hour air port post office.My oxygen was gone by the time I was leaving the grocery store where I had sat in the coffee shop making out my checks. I drove to four gas stations looking for one that had more than one attendant so that I could try holding up my HC hanger with no success before I got out to fill it myself. By this time I was shivering. The car had to be off, I took my tank off and pulled on a cold heavy wool sweater. I was never warm after that. When I was finally home I gathered everything up to carry in at one time because I felt I just could not go

back out in the cold with no oxygen. I threw open the storm door with no thought of even attempting to close it. I unlocked the front door and dumped everything in the entry way and ran for my oxygen (ran as in frantically trying to reach it). In all of my effort to get oxygen and get warm I forgot about going back to check the doors. Well folks I left them open, storm door wide open and front door cracked half an inch. It sure let in enough cold air but what if we had had more wind, what if a stranger... did the paper carrier pull it closed to the point it was... I am so used to doing what needs to be done until it is finished. I am OK! Just when I need to be most organized and efficient, here I am slow and overly optimistic. I will have to pay closer attention to getting things done. I like to make as few trips out as possible...oh and the mail carrier pulled the door off my box...now, fix mail box,

find full service gas station, make sure car windows are not frozen so that they will roll down at drive up windows...what else to think about...oh and the food from the self serve deli had probably been sneezed on...just another happy day in the neighborhood. ..Margaret