Re: Re: I'm in a mess

[Guest guest]

Connie

You are in my prayers and I hope you feel better soon.

Jackie

Re: I'm in a mess

>

> Connie,

>

> I will be praying for you...

>

> Terri G.

>

>

>

>>

>> Guys, I have been fighting a problem for over two months. I have

> breathing problems most of the time; but it has gone to the ridiculous

> point. If it would help and I could manage it; I would sit in one place

> and scream and cry till one of us gave up. My bronchial tubes or me.

> The pulmonologist and I aren't having much success in figuring it out.

> I have doubled my prednisone, trying to get relief from this smothering,

> wheezy, air trapping mess I'm going through. At least the feeling like

> I'm going to eat the floor has let up. He did a bronchoscopy Wednesday

> and said it was really infected, and he did five biopsies, but I haven't

> got the report yet. I know my sarc is in flare, I can see the

> granulomas getting bigger and more plentiful in my hands. The breathing

> is driving me crazy, I feel swollen up inside, and I am starving for

> air. He is trying to figure out something I am not allergic too; most

> of the anti-inflamatories have sulfa

>> in them. Keep me in your prayers, and pray he figures something out,

> I am miserable; and would slap a grizzly bear in the nose for a good

> breath right now, then dare him not to like it with the pred I'm on.

>>

>> Thanks for letting me vent, I am so tired. I know you all are too.

> Connie

>>

>>

>>

>

>

>

>

>

> ------------------------------------

>

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[Guest guest]

Did he give you portable oxygen to use at home??

You also need some good inhalers-- Advair? Albuterol to open the airways quickly, and the breathing treatments? If you can tolerate it-- use an icepack on your back to help get some of that immediate inflammation down (you don't want to do it too often-- as too much cold can actually iritate the airways more.].

Fluids-- FLUIDS--FLUIDS-- WHATEVER IS IN THERE NEEDS TO COME OUT, AND MUCINEX (Guafinisen) IS WONDERFUL FOR THAT-- ASK HIM ABOUT IT. It thins the mucus so you can get it up and out.

Take care,

Tracie

To: Neurosarcoidosis Sent: Friday, September 4, 2009 10:11:53 AMSubject: Re: Re: I'm in a mess

ConnieYou are in my prayers and I hope you feel better soon.Jackie Re: I'm in a mess>> Connie,>> I will be praying for you...>> Terri G.>>> >>>> Guys, I have been fighting a

problem for over two months. I have> breathing problems most of the time; but it has gone to the ridiculous> point. If it would help and I could manage it; I would sit in one place> and scream and cry till one of us gave up. My bronchial tubes or me.> The pulmonologist and I aren't having much success in figuring it out.> I have doubled my prednisone, trying to get relief from this smothering,> wheezy, air trapping mess I'm going through. At least the feeling like> I'm going to eat the floor has let up. He did a bronchoscopy Wednesday> and said it was really infected, and he did five biopsies, but I haven't> got the report yet. I know my sarc is in flare, I can see the> granulomas getting bigger and more plentiful in my hands. The breathing> is driving me crazy, I feel swollen up inside, and I am starving for> air. He is trying to figure out something I am not allergic

too; most> of the anti-inflamatories have sulfa>> in them. Keep me in your prayers, and pray he figures something out,> I am miserable; and would slap a grizzly bear in the nose for a good> breath right now, then dare him not to like it with the pred I'm on.>>>> Thanks for letting me vent, I am so tired. I know you all are too.> Connie>>>>>>>>>>>> ------------ --------- --------- ------>> ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community>>> CHATROOM LINK: http://www.sarcbuddies.com -- Open all the time.....>> Message Archives:-> http://groups. yahoo.com/ group/Neurosarco idosis/messages>> Members Database:-> Listings of locations, phone

numbers, and instant messengers.> http://groups. yahoo.com/ group/Neurosarco idosis/database>>

[Guest guest]

Thank you so much. I try not to say to much to my family, even though they can hear me. It means so much to be able to say how I am really feeling without worrying about hurting or worrying someone. I appreciate you all...connie

Subject: Re: Re: I'm in a messTo: Neurosarcoidosis Date: Friday, September 4, 2009, 1:11 PM

ConnieYou are in my prayers and I hope you feel better soon.Jackie Re: I'm in a mess>> Connie,>> I will be praying for you...>> Terri G.>>> >>>> Guys, I have been fighting a problem for over two months. I have> breathing problems most of the time; but it has gone to the ridiculous> point. If it would help and I could manage it; I would sit in one place> and scream and cry till one of us gave up. My bronchial tubes or me.> The pulmonologist and I aren't having much success in figuring it out.> I have doubled my prednisone, trying to get relief from this smothering,> wheezy, air trapping mess I'm going through. At least the feeling like> I'm going to eat the floor has let up. He did a bronchoscopy Wednesday> and said it was really infected, and he did five biopsies, but I haven't> got the report yet. I know my sarc is in flare, I can see the> granulomas getting bigger and more plentiful in my hands. The breathing> is

driving me crazy, I feel swollen up inside, and I am starving for> air. He is trying to figure out something I am not allergic too; most> of the anti-inflamatories have sulfa>> in them. Keep me in your prayers, and pray he figures something out,> I am miserable; and would slap a grizzly bear in the nose for a good> breath right now, then dare him not to like it with the pred I'm on.>>>> Thanks for letting me vent, I am so tired. I know you all are too.> Connie>>>>>>>>>>>> ------------ --------- --------- ------>> ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community>>> CHATROOM LINK: http://www.sarcbudd ies.com -- Open all the time.....>> Message Archives:-> http://groups. yahoo.com/ group/Neurosarco idosis/messages>> Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups. yahoo.com/ group/Neurosarco idosis/database>>

[Guest guest]

Thanks so much Tracie, I hadn't thought of the mucinex. The xopenex nebulizer treatments usually work really well, but this time it's like I haven't even done a treatment. Combivent is the only inhaler I use, I'm allergic to advair. I do have at home oxygen, I guess I thought it wouldn't work with all the congestion, I am beginning to think my brain air starved; I should have known better.

Thanks again for the good advice///connie

Subject: Re: Re: I'm in a messTo: Neurosarcoidosis Date: Friday, September 4, 2009, 4:34 PM

Did he give you portable oxygen to use at home??

You also need some good inhalers-- Advair? Albuterol to open the airways quickly, and the breathing treatments? If you can tolerate it-- use an icepack on your back to help get some of that immediate inflammation down (you don't want to do it too often-- as too much cold can actually iritate the airways more.].

Fluids-- FLUIDS--FLUIDS- - WHATEVER IS IN THERE NEEDS TO COME OUT, AND MUCINEX (Guafinisen) IS WONDERFUL FOR THAT-- ASK HIM ABOUT IT. It thins the mucus so you can get it up and out.

Take care,

Tracie

From: jackie <shadowme810@ verizon.net>To: Neurosarcoidosis@ yahoogroups. comSent: Friday, September 4, 2009 10:11:53 AMSubject: Re: Re: I'm in a mess

ConnieYou are in my prayers and I hope you feel better soon.Jackie Re: I'm in a mess>> Connie,>> I will be praying for you...>> Terri G.>>> >>>> Guys, I have been fighting a problem for over two months. I have> breathing problems most of the time; but it has gone to the ridiculous> point. If it would help and I could manage it; I would sit in one place> and scream and cry till one of us gave up. My bronchial tubes or me.> The pulmonologist and I aren't having much success in figuring it out.> I have doubled my prednisone, trying to get relief from this smothering,> wheezy, air trapping mess I'm going through. At least the feeling like> I'm going to eat the floor has let up. He did a bronchoscopy Wednesday> and said it was really infected, and he did five biopsies, but I haven't> got the report yet. I know my sarc is in flare, I can see the> granulomas getting bigger and more plentiful in my hands. The breathing> is

driving me crazy, I feel swollen up inside, and I am starving for> air. He is trying to figure out something I am not allergic too; most> of the anti-inflamatories have sulfa>> in them. Keep me in your prayers, and pray he figures something out,> I am miserable; and would slap a grizzly bear in the nose for a good> breath right now, then dare him not to like it with the pred I'm on.>>>> Thanks for letting me vent, I am so tired. I know you all are too.> Connie>>>>>>>>>>>> ------------ --------- --------- ------>> ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community>>> CHATROOM LINK: http://www.sarcbudd ies.com -- Open all the time.....>> Message Archives:-> http://groups. yahoo.com/ group/Neurosarco idosis/messages>> Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups. yahoo.com/ group/Neurosarco idosis/database>>

[Guest guest]

Yep, your brain is starved for oxygen. Congestion adds to the o2 deprivation. So get on your portable!

Restart your breathing treatments-- your doc is probably thinking you're doing them-- so he's figured he has that base covered.

I know that i'm having to surrender to daily (4x) do my breathing txt, and use my o2 all the time-- or my brain is mush. I can so relate...

The Mucinex is over the counter with it at 400mg-- when it was by rx, it was at 600mg and the script was to take 1200mg am and 1200mg pm. So you can take 2-3 tablets at a time. It is a godsend, I now stay on it year round, or the gunk in my lungs turns to concrete. Also use the sinus rinse--even if your sinuses are clear. Also, if you are on a cpap--- make sure you use it with a humidifier-- and the heat turned up on the humidifier--- so that you're getting warm moist air. Change out the water and use distilled-- that way you aren't getting whatever cooties may be in the tap water. If you have a cough-- then the Mucinex DM is the one you want. It thins the mucus and calms the cough, but still helps to keep the cough productive.

Take care,

Tracie

NS Co-owner/moderator

To: Neurosarcoidosis Sent: Saturday, September 5, 2009 5:06:16 PMSubject: Re: Re: I'm in a mess

Thanks so much Tracie, I hadn't thought of the mucinex. The xopenex nebulizer treatments usually work really well, but this time it's like I haven't even done a treatment. Combivent is the only inhaler I use, I'm allergic to advair. I do have at home oxygen, I guess I thought it wouldn't work with all the congestion, I am beginning to think my brain air starved; I should have known better.

Thanks again for the good advice///connie

From: tracie feldhaus <tiodaat2001@ yahoo.com>Subject: Re: Re: I'm in a messTo: Neurosarcoidosis@ yahoogroups. comDate: Friday, September 4, 2009, 4:34 PM

Did he give you portable oxygen to use at home??

You also need some good inhalers-- Advair? Albuterol to open the airways quickly, and the breathing treatments? If you can tolerate it-- use an icepack on your back to help get some of that immediate inflammation down (you don't want to do it too often-- as too much cold can actually iritate the airways more.].

Fluids-- FLUIDS--FLUIDS- - WHATEVER IS IN THERE NEEDS TO COME OUT, AND MUCINEX (Guafinisen) IS WONDERFUL FOR THAT-- ASK HIM ABOUT IT. It thins the mucus so you can get it up and out.

Take care,

Tracie

From: jackie <shadowme810@ verizon.net>To: Neurosarcoidosis@ yahoogroups. comSent: Friday, September 4, 2009 10:11:53 AMSubject: Re: Re: I'm in a mess

ConnieYou are in my prayers and I hope you feel better soon.Jackie Re: I'm in a mess>> Connie,>> I will be praying for you...>> Terri G.>>> >>>> Guys, I have been fighting a problem for over two

months. I have> breathing problems most of the time; but it has gone to the ridiculous> point. If it would help and I could manage it; I would sit in one place> and scream and cry till one of us gave up. My bronchial tubes or me.> The pulmonologist and I aren't having much success in figuring it out.> I have doubled my prednisone, trying to get relief from this smothering,> wheezy, air trapping mess I'm going through. At least the feeling like> I'm going to eat the floor has let up. He did a bronchoscopy Wednesday> and said it was really infected, and he did five biopsies, but I haven't> got the report yet. I know my sarc is in flare, I can see the> granulomas getting bigger and more plentiful in my hands. The breathing> is driving me crazy, I feel swollen up inside, and I am starving for> air. He is trying to figure out something I am not allergic too; most> of

the anti-inflamatories have sulfa>> in them. Keep me in your prayers, and pray he figures something out,> I am miserable; and would slap a grizzly bear in the nose for a good> breath right now, then dare him not to like it with the pred I'm on.>>>> Thanks for letting me vent, I am so tired. I know you all are too.> Connie>>>>>>>>>>>> ------------ --------- --------- ------>> ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community>>> CHATROOM LINK: http://www.sarcbudd ies.com -- Open all the time.....>> Message Archives:-> http://groups. yahoo.com/ group/Neurosarco idosis/messages>> Members Database:->

Listings of locations, phone numbers, and instant messengers.> http://groups. yahoo.com/ group/Neurosarco idosis/database>>

[Guest guest]

Thanks so much Tracie, I am trying so hard to get it under some kind of control. I have got to get everything straight, I go to see my son graduate from basic the 18th, he worries and I don't want him to see me messed up if I can help it.

Thanks for explaining about the sinus washer, you picked up on a question before I asked it; I wondered how it didn't drowned you.

Thanks again, connie

From: tracie feldhaus <tiodaat2001@ yahoo.com>Subject: Re: Re: I'm in a messTo: Neurosarcoidosis@ yahoogroups. comDate: Friday, September 4, 2009, 4:34 PM

Did he give you portable oxygen to use at home??

You also need some good inhalers-- Advair? Albuterol to open the airways quickly, and the breathing treatments? If you can tolerate it-- use an icepack on your back to help get some of that immediate inflammation down (you don't want to do it too often-- as too much cold can actually iritate the airways more.].

Fluids-- FLUIDS--FLUIDS- - WHATEVER IS IN THERE NEEDS TO COME OUT, AND MUCINEX (Guafinisen) IS WONDERFUL FOR THAT-- ASK HIM ABOUT IT. It thins the mucus so you can get it up and out.

Take care,

Tracie

From: jackie <shadowme810@ verizon.net>To: Neurosarcoidosis@ yahoogroups. comSent: Friday, September 4, 2009 10:11:53 AMSubject: Re: Re: I'm in a mess

ConnieYou are in my prayers and I hope you feel better soon.Jackie Re: I'm in a mess>> Connie,>> I will be praying for you...>> Terri G.>>> >>>> Guys, I have been fighting a problem for over two

months. I have> breathing problems most of the time; but it has gone to the ridiculous> point. If it would help and I could manage it; I would sit in one place> and scream and cry till one of us gave up. My bronchial tubes or me.> The pulmonologist and I aren't having much success in figuring it out.> I have doubled my prednisone, trying to get relief from this smothering,> wheezy, air trapping mess I'm going through. At least the feeling like> I'm going to eat the floor has let up. He did a bronchoscopy Wednesday> and said it was really infected, and he did five biopsies, but I haven't> got the report yet. I know my sarc is in flare, I can see the> granulomas getting bigger and more plentiful in my hands. The breathing> is driving me crazy, I feel swollen up inside, and I am starving for> air. He is trying to figure out something I am not allergic too; most> of

the anti-inflamatories have sulfa>> in them. Keep me in your prayers, and pray he figures something out,> I am miserable; and would slap a grizzly bear in the nose for a good> breath right now, then dare him not to like it with the pred I'm on.>>>> Thanks for letting me vent, I am so tired. I know you all are too.> Connie>>>>>>>>>>>> ------------ --------- --------- ------>> ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community>>> CHATROOM LINK: http://www.sarcbudd ies.com -- Open all the time.....>> Message Archives:-> http://groups. yahoo.com/ group/Neurosarco idosis/messages>> Members

Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups. yahoo.com/ group/Neurosarco idosis/database>>