Tracie update

September 7, 2008

Tracie, I sure hope you get back to feeling your 'normal' soon. I also have a son at home yet...26. He still hasn't found a full-time job but does work part-time...but doesn't make enough to move out yet. It will be good for him to move when he does, too, cuz he takes too much advantage of us and doesn't help out around the house. But he has depression problems so i guess I would worry more if he moved out. One of those double-edged things to worry about....lol. My brother was operated on Friday for a hematoma on the brain yesterday. They think it was a slow leak from a fall he had some time back. My mom finally talked him into going to the doc and it's a good thing he did. They believe they got

all the fluid out and are waiting for test results for now. I went to the doc Wednesday and we're still working on swollen and sore neck issues(salivary glands?). I'll be on an antibiotic for about three 'more' weeks since it seemed to help some. I spent most of August in the house feeling like crap so I'm hoping to enjoy September before that passes by, too. It is a constant battle to keep the house clean but I feel better when I put some effort into it. A few weeks in bed and it looks like a cyclone went through it....lol. I'm still at 74 lbs. lost. I haven't lost much during the last five-six weeks cuz when i'm in over-pain....I'm just not as careful and I seem to have a harder time eating veggies when i'm in pain. The very sight and taste of them seems different. I also love reading any articles you find. Thanks so much. Take care of yourself and rest much.

hugs S. 29:11, For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future. "If anyone would come after Me, he must deny himself" ( 16:24 NIV).Subject: Tracie updateTo: NSMods-owner , "Neurosarcoidosis" <Neurosarcoidosis >Date: Sunday, September 7, 2008, 3:33 AM

As you all know, I've been fighting a respiratory infection for the last month. I'm much better, but still not back to my "previous" level of exhaustion. Man do we take for granted that even our feeling lousy can be a step up from where we could be...

I apologize that I'm not able to be here for all of you, it's just too much right now, so I'm lurking, reading about all the joys and celebrations that so many of you are being gifted with right now--- my congratulations to the new grandma's, , I'm so proud of you-- keep your head in the text books, and keep on keeping on-- it's wonderful to see you setting goals and doing the work necessary to achieve. I know that you have a special trip coming up-- enjoy!

My son is finally in the stages of moving out-- he started paying rent on a mobile home down in Paradise as of the 1st of Sept, and last night we took over a few things to his place. He's off deer hunting this weekend, so we may finish getting him moved tomorrow night. I'm so looking forward to having our home become ours, and though I'll miss him-- it's been time for him to move on for quite a while, and so this is a good thing.

I know Marla is not feeling all that well, and Debbie is helping pick up the slack, it's appreciated guys. Rose-- what's up lady? How are you doing? I read Darlene's update-- and I know that all the challenges keep coming up-- so just appreciate those good days!

I'll keep forwarding the articles I find helpful-- and I do hope that you all will read them, save the ones that make sense to you, print them out-- get the sleep studies done and make sure you're not dealing with sleep apnea-- all that extra weight we put on from steroids seem to make us very prone to this issue, then add the constant pain and fevers, and secondary depression that lack of sleep brings on (along with the added pain cycle created from the increased inflammation and seratonin- norephinephrine levels getting screwed up) and hmmm-- is this a problem???

I have discovered that Melatonin (I take 10mg at night) helps tremendously- -- especially if I follow the instructions and get up and get a few minutes of daylight coming into the house-- so that it doesn't leave me feeling hung over all day-- without the brainfog that the sleeping pills induced.

Anyway, that's about all my brain can do tonight-- and this is probably so disjointed-- but hey- if I felt like caring-- I would.

-- how are you? how about an update guys-- it's time to check in.

Blessings,

Tracie

NS Co-owner/moderator

November 22, 2008

Hi Tracie,

Hope you are out of the blahs from med by now. I am still having stomach issues and the cold is starting to affect me. It's been in the 30's this week. Yek, already. But the holidays are almost here - *cringe* - At least we are going to my brother's house for Thanksgiving .....I just have to bring soda! Nice and easy. I told all 3 boys they were to be present, we will see what happens.....lol

Subject: Tracie updateTo: neurosarcoidosis Cc: nsmods Date: Thursday, November 20, 2008, 3:30 PM

Yesterday was Remicade day, and I"m worn out today. If you don't hear from me for a couple of days-- you'll know that I'm resting. I hope that everyone is doing ok-- it is very quiet out here in cyberland.

HOws the gang?

Love to all,

Tracie

NS Co-owner/moderator

November 23, 2008

Tracie,

Hope you are resting and letting the Remicade do its thing. be good to

you.

Terri G.

>

> Yesterday was Remicade day, and I " m worn out today. If you don't hear

from me for a couple of days-- you'll know that I'm resting. I hope

that everyone is doing ok-- it is very quiet out here in cyberland.

> HOws the gang?

>

> Love to all,

> Tracie

> NS Co-owner/moderator

>

December 17, 2008

take care Tracie. God Bless and Keep you.

Jackie

Tracie update

Today was Remicade day for me, and I've been wiped out for the last week. Rose, Deb, , Marla--- can you guys hold down the fort please.

Darlene is still gone this week-- I think. I know it was for 2 wks-- but don't remember when she left...

Love to all,

Tracie

December 17, 2008

All the best to you Tracie. Rest up!!!! "How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these." ~ Washington CarverFrom: tracie

feldhaus To: nsmods ; NSMods-owner ; neurosarcoidosis Sent: Wednesday, December 17, 2008 8:33:28 PMSubject: Tracie update

Today was Remicade day for me, and I've been wiped out for the last week. Rose, Deb, , Marla--- can you guys hold down

the fort please.

Darlene is still gone this week-- I think. I know it was for 2 wks-- but don't remember when she left...

Love to all,

Tracie

December 17, 2008

Tracie, Just rest up, I had my Remicade last Friday, so starting to get some energy back now! Marla

Today was Remicade day for me, and I've been wiped out for the last week. Rose, Deb, , Marla--- can you guys hold down

the fort please.

Darlene is still gone this week-- I think. I know it was for 2 wks-- but don't remember when she left...

Love to all,

Tracie

-- Marla BramerIndependent Beauty Consultant Kay mbramer@...www.marykay.com/mbramer

May the Lord bless you and keep you,May the Lord make his face to shine uponYou,And be gracious to you;May the Lord lift up his favor upon you and give you his peace.(Numbers 6:24-26)

March 26, 2009

Please take care Tracie, we need you out here....Connie

Stroke Warning Signs

Wednesday, March 25, 2009 7:56 PM

From:

tiodaat (AT) att (DOT) net

To:

Neurosarcoidois@ yahoogroups. com

Dear Neuro: PLEASE PRINT THIS INFORMATION OUT AND POST IT WHERE YOU CAN FIND IT IN AN EMERGENCY. i use the cupboard door inside where I keep my phone books. I have found an interesting article in American Heart Association Website. Look at http://www.american heart.org/ presenter. jhtml?identifier =4742 Regards,

July 6, 2009

Tracie My prayers are with you. Please take care of yourself. We all need to read your smile.

Take extra care

Jackie

Tracie update

Well, today starts a full month of being sick, and it looks like it's a collapsed lung-- so I'm waiting for a call back to see if I am doing another bronchoscopy this week. I've done 2 courses of Levaquin, and it hasn't knocked this out all the way-- so we'll see.

I'm wiped out, and am just going day to day-- be back when I can.

Hugs,

Tracie

July 6, 2009

Oh Tracie, I'm so sorry your going through all this, and I know it hurts like a cracker; not to mention you wish someone would get the tag # of the truck that keeps running over you. I'll be praying your lung gets better soon. There is an amazing herb that helps with lungs, it's called lung support. My mother talked me into trying it, I was very skeptical; then i was amazed. And..you only have to take it till the lung heals. I used to have pneumonia on a regular basis, since lung support I have never had pneumonia again.

Subject: Tracie updateTo: nsmods , "Neurosarcoidosis" <Neurosarcoidosis >Date: Monday, July 6, 2009, 4:23 PM

Well, today starts a full month of being sick, and it looks like it's a collapsed lung-- so I'm waiting for a call back to see if I am doing another bronchoscopy this week. I've done 2 courses of Levaquin, and it hasn't knocked this out all the way-- so we'll see.

I'm wiped out, and am just going day to day-- be back when I can.

Hugs,

Tracie

September 9, 2009

I am starting a prayer tag right here for our wonderful owners and moderators.

You all are in my prayers each and every day. Keep on keeping on. God bless you and all the sarc buddies here.

Jackie

Come on check in and join in prayer and good wishes.

Tracie Update

As most of you know, I've been MIA for a couple of months now. I ended up with a serious lung and bronchial infection-- and a collapsed lung. The lung has been collapsed for a long time-- I think it was last year about this time when I found that I could no longer even walk thru the grocery store without being severely winded. It was literally an overnight change.

I live in No. California, and was within 2 miles of some of the worst forest fires this state has seen. For all of last summer, we had all our important documents and pictures and such-- in the trunk of my car, and were ready to evacuate if we had needed to. Fortunately for us, the evacs stopped on the other side of main road coming to our home-- less than 1/2 mile away. The smoke did not clear until November. With pulm sarc-- that was the worst that could happen. My lungs couldn't handle it.

When my lung collapsed, and the bronchitis set in-- we actually figured it was the inflammation from the poor air quality- and the xrays did not show the collapsed lung.

I found myself in the ER 3 times and each time a new xray was taken. The lobe that collapsed had actually folded over and back under itself, and so the view wasn't confirming why I was struggling the way I was.

Finally, about 2 months ago- I went again to another facility and the xray was taken at a slightly different angle, and low and behold-- we found the problem. I ended up on Levaquin for 21 days, and then Rocephin injections for 3 days.

I had to discontinue my Remicade and Methotrexate for 10 weeks, and found out just how effective that the Remicade is for me. By the 8th week, my brain fog was back with a venegence, I again was losing the ability to problem solve, I couldn't breathe and had to go onto prednisone bursts to try to get the lungs settled down-- and the "inside" the bone pain was back. I also found myself "flying off the handle and leveling those I love for daring to be in my world while I was under the influence of prednisone. It was not pretty....

As soon as I was able to finally get back on my Remicade, I was able to stop the pred burst (it was a 40,30, 20, 10mg over 4 days multiple times) and just use my breathing machine and Mucinex. My brain fog has cleared somewhat, and that bone pain is much better.

The challenge has been that having fought the lung issues for so long, that my heart is more compromised and the pulmonary hypertension is worse. I also have 3 heart valves that are stenosed and showing signs of regurgitation.

I don't want lung or heart transplant, and the local docs don't even want to consider it. Sarc generally comes back in transplants, and I'm to far compromised to handle the surgery.

The challenge is that my exhaustion and fatigue levels are through the roof-- and sleeping 12-16 hrs a day is not uncommon. Just yesterday, I went to the local Dollar Store to help find some containers for apple juice and just walking thru these small stores was too much. had left my scooter home, as this stop was an "after-thought."

I keep thinking that I will fight my way back and regain some strength, and I'm not willing to give up that thought yet.

For me, the saving grace of all this is that I've learned and continue to learn that there are small things I can do to make this time as good as possible. I know that if I give in and junk food out, that I will hurt-- alot. If I get lazy and don't drink enough fluids-- the pain is nasty. I know that my neuropathy will hammer me into the ground if I go on a sugar binge-- and in a large part it is diabetic neuropathy. Also, if my blood sugar is high-- my vision is junk.

I have been working on these issues, and had better luck with making the changes to my diet, than I ever had taking huge doses of pain meds.

I'm not even tackling the fitness issue, right now any aerobic exercise would kill me. My lungs can't get the oxygen to my heart and so with pulmonary hypertension the chances of a blood clot forming either in the lungs or in the vessel that goes from the lungs to the heart narrows to handle the extra demands that exercise would require, makes it a real tightrope walk.

I'm online right now because I know that Marla's husband just had a heart attack and needs her energy to help him at this time. Rose is still having and needing some down time, and Deb is recovering from vacation. Darlene is still struggling with a bad elbow, and is needed by her family to cover all the bases their lives require. is also balancing her life and sarcoidosis and has found a comfortable place in accepting and moving on to different areas.

These ladies make up your moderators and ownership of this group and we tagteam and step up when one or more of us is in crisis. We know have 600 members, so it is so important that we all help teach each other about this disease and the options. I know that right now a day or two may go by without one of us being online.

I ask that those of you that know or can help others navigate their way into the MESSAGE ARCHIVES AND THE LINKS section-- feel free to do so. Most of the topics that come up have been addressed previously, and you can search the Message Archives by topic.

Darlene and I are communicating online as we can, and we are both aware of the needs of the moderators, so one of us will pick up the slack as needed.

I do ask hat you keep all of us in your prayers and thoughts, and that for those of you that have found success in using this site to learn about your disease, spread the word. Do use caution in giving out medical information-- and when possible, refer to the ARCHIVES. Misinformation could cost someone their life or vision. The info in the ARCHIVES generally has come from medical articles that we've researched-- and isn't meant to replace your relationship with your docs. None of us are doctors, and so we do rely on these articles so that we don't put you in dangers way.

Greg, Connie, thank you so very much for being there for so many of the newbies. It has not gone unnoticed.

To Darlene and all the wonderful moderators-- I'm not really back yet, and you know how much you are appreciated.

To all,

A HUGE (((((((((((((((((((((((( GROUP )))))))))))))))))))) HUG,

Tracie

NS Co-owner/moderator

September 23, 2009

Wow. I just went and checked my name and found four court cases. Luckily they weren't me. My name but not my addy. Alll the cases were finished/closed. Sorry that you guys had to go through that mess! I saved/bookmarked that site for future use. I think with times being hard...that may even be more of a problem. S.Subject: Re: Tracie UpdateTo: Neurosarcoidosis Date:

Wednesday, September 23, 2009, 10:50 PM

OH Tracie

I for one am sorry I don't post so much but I have been really busy with the law. I am in the process of moving to my own place and was refused housing in an apt. for the disabled. The reason???? Criminal activity. I was shocked so I went on the CCAP site for Wisconsin and found I had a warrant out for my arrest. ARGH!!!!!!

It was written on a check from my now defunked marriage, in 2001. It was cashed here in Mauston where I now live some 5o miles away from there I used to live. No Identification was asked for and it was cashed in a place where I am well known. A place where I purchased my many many prescriptions. Can you say forgery!!!!!

Well I turned myself in and am out on Bail until I can get an attorney----public defender-----and fight this. Needless to say I am a bit afraid. It is not my signature and I did not write the check. I will win I hope.

Also I had a mild flare up in my eyes along with a UTI. My granddaughter is having some trouble and so my daughter is knocking at moms door. That is enough. But all this time I haven't forgotten all of you. I pray for all of you each and every day.

So if you will forgive me for being neglectful in posting I will be quite happy. I will try to post more often. I don't like to complain to anyone so I stay quiet Usually. lol

You take care of you..

Best wishes

Jackie I don't look good in strips. lmao

Tracie Update

Ok gang, I post and you all disapear. All 600 of you. What's up? I know I can come on strong, and these days the sarc advancement has me being sometimes less than tackfull.

I have always told it like it is-- straight and direct. i'm also at a place where for me, I'm frustrated that so many people will chose to do all the stuff they know is not healthy for themself, and puts others at risk. Living on immunosuppressants can make all of us a bit more crazy-- do you go to the grocery store or shopping and risk serious infection? I don't want to live in fear of what if-- so i try to be pro-active in what I do to take care of me. Washing my hands after shopping so that if the kid in the cart has a cold, I'm not in as much danger of getting it. Keeping my hands away from my face-- using my arms to push open a door rather than use the handle, etc. Common sense stuff. That is as good as I can do.

I am watching my mom lose her sight to diabetes, and if you go over after 3pm each day, she's on her 3rd or 4th highball, and breakfast and lunch was half a sweetroll and a cup of coffee with hot chocolate added. But, she did give herself her insulin injection-- morning and night. She's never learned to see what is going on and adjust her dose-- she doesn't want to.

My dad has advanced Parkinsons, and he doesn't feel well enough to cook for them now, and he took that over when he retired-- so mom's lost the memory to do it--- and lacks the vision to be safe.

I watch myself tryiing to learn to manage my diabetes, and it is overwhelming. It's part of this years changes, and yes-- it has made me understand a little bit of where my mom's coming from. I try to be patient with it-- but i'm not very good at it.

I'm struggling with 3 heart valves not working right-- and I have been sick for this whole year. The pulmonary stuff is advancing, because of the combo. My docs want me to get back to LA to see Dr. Sharma, and finally went back to full-time work on Monday. At least for the next 6 wks-- we hope that we don't have any more cuts..

I am only able to stick my head in here a couple of times each week, and generally haven't been well enough to respond. When I do it's because I see that something needs to be addressed right away.

I care so much for all of you, and want you to be able to be as healthful as you can be even with sarcoidosis. It isn't a death sentence, and so many of the problems associated with it can be handled using common sense approaches. I know it can effect our personalities, and I've seen alot of change in mine this last year. I try to remind myself that if I'm experiencing this-- then all of you might also be in some of the same place with your sarcoidosis.

It is important that we communicate, and that we reach out to those in need. If someone can email me a sense of humor-- I'd appreciate it. Right now, life is hard.

Take care,

Tracie

NS Co-owner/moderator

October 26, 2009

Today is Remicade day for me, and so I'll be out for a couple of days. I just got my reg flu shot last week, will be getting the H1N1 when it's avail. So far, no one has the injectable and the nasal isn't for us.

I'm still really struggling with the breathing-- and I know it's the fibrosis in my lungs that will be there for the remainder.

Winter is tough, so far we've only had to light the fire 3x. With the house being closed up, I can sure tell the difference in inside air quality. We wanted to pull up the carpet last year and put down hardwood floors (the fake stuff) but with 's work being so precarious, we felt we couldn't spend the extra cash. He's back to full time for now..

Take care and know you're all loved,

Tracie

NS Co-owner/moderator

To: Neurosarcoidosis Sent: Sunday, October 25, 2009 8:25:20 PMSubject: Re: marla

Tracie, you just reminded me of the tussinex pearls, I use to get them and they did work, I do use Robitussin DM extra strength and that works good too. I'm not coughing too much during the day, as long as I stay hydrated, but in the morning, I cough for awhile getting all the gunk up, then I'm OK. How are you doing, with winter coming I'm sure you like me are not happy about the cold, I hope you are doing better going into the winter. What do you think about the H1N1 flu shot?? I have to ask my doctor, but I've been so sick for the past 3 weeks, know I can't get while sick, did you get one?? Hugs to you my friend, Marla

On Sat, Oct 24, 2009 at 11:10 PM, tracie feldhaus <tiodaat2001@ yahoo.com> wrote:

Marla,

Can you take the Tussinex Pearls for cough? Those seem to work the best for me. That and the Mucinex DM. Gets the gunk up out of the lungs, and bronchials and quiets the cough.

I'm thinking of you lady.

Hugs,

Tracie

From: Marla Bramer <mebramer (AT) gmail (DOT) com>To: Neurosarcoidosis@ yahoogroups. comSent: Saturday, October 24, 2009 7:50:12 PMSubject: Re: marla

Thank you, I get Remicade on Wed. and I can't wait, I've coughed so much my ribs ache, more the muscles aroundthem, I'm sure with time this coughing will go away. Thanks for the hugs. Marla

On Sat, Oct 24, 2009 at 11:57 AM, <JessicAbouhamama@ aol.com> wrote:

I am sorry to hear of ur infections.. . I hope the meds start to work and u get feeling somewhat well again..

many hugs and blessings and a pain free day

October 26, 2009

Hugs for you Tracie, I hope you have good days, at least as good as they can be after Remicade, Mine is on Wed. So I will be out a couple of days too. but will try to stay in touch today and tomorrow.

Blessings, Marla

Today is Remicade day for me, and so I'll be out for a couple of days. I just got my reg flu shot last week, will be getting the H1N1 when it's avail. So far, no one has the injectable and the nasal isn't for us.

I'm still really struggling with the breathing-- and I know it's the fibrosis in my lungs that will be there for the remainder.

Winter is tough, so far we've only had to light the fire 3x. With the house being closed up, I can sure tell the difference in inside air quality. We wanted to pull up the carpet last year and put down hardwood floors (the fake stuff) but with 's work being so precarious, we felt we couldn't spend the extra cash. He's back to full time for now..

Take care and know you're all loved,

Tracie

NS Co-owner/moderator

To: Neurosarcoidosis

Sent: Sunday, October 25, 2009 8:25:20 PMSubject: Re: marla

Tracie, you just reminded me of the tussinex pearls, I use to get them and they did work, I do use Robitussin DM extra strength and that works good too. I'm not coughing too much during the day, as long as I stay hydrated, but in the morning, I cough

for awhile getting all the gunk up, then I'm OK. How are you doing, with winter coming I'm sure you like me are not happy about the cold, I hope you are doing better going into the winter. What do you think about the H1N1 flu shot?? I have to ask

my doctor, but I've been so sick for the past 3 weeks, know I can't get while sick, did you get one?? Hugs to you my friend, Marla

On Sat, Oct 24, 2009 at 11:10 PM, tracie feldhaus <tiodaat2001@ yahoo.com> wrote:

Marla,

Can you take the Tussinex Pearls for cough? Those seem to work the best for me. That and the Mucinex DM. Gets the gunk up out of the lungs, and bronchials and quiets the cough.

I'm thinking of you lady.

Hugs,

Tracie

From: Marla Bramer <mebramer (AT) gmail (DOT) com>To: Neurosarcoidosis@ yahoogroups. com

Sent: Saturday, October 24, 2009 7:50:12 PMSubject: Re: marla

Thank you, I get Remicade on Wed. and I can't wait, I've coughed so much my ribs ache, more the muscles aroundthem, I'm sure with time this coughing will go away. Thanks for the hugs.

Marla

On Sat, Oct 24, 2009 at 11:57 AM, <JessicAbouhamama@ aol.com> wrote:

I am sorry to hear of ur infections.. . I hope the meds start to work and u get feeling somewhat well again..

many hugs and blessings and a pain free day

October 26, 2009

Tracie, I pray everything goes well with you getting your Remicade. I think of you often and hope your days are filled with joy. Did you have any reaction to the flu shot? hugs S.Life is short...live it to the fullest...to your last living breath.

I am sorry to hear of ur infections.. . I hope the meds start to work and u get feeling somewhat well again..

many hugs and blessings and a pain free day

October 27, 2009

Marla

I am curious about being "out" a couple days after Remicade since Dr B says my Cytoxin isn't working & wants to change me to Remicade.

in 'tuckyJoin our Sock Challenge for Orphans in Kazakhstan http://groups. yahoo.com/ group/Mittens_ for_Akkol/ grannylunatic@...

I am sorry to hear of ur infections.. . I hope the meds start to work and u get feeling somewhat well again..

many hugs and blessings and a pain free day

January 2, 2010

Tracie, I'm sorry you are going through so much, and I will keep you in my prayers, I hope they find somehting that can help you, I think of you often. I'm glad you got your computer up and running, I have been too busy with the holidays, and feeling it

now, back on Methotrexate as the walking is getting worse. I'm glad there are drugs to help us, I just wish they would find drugs that would stop the progression, or put us in remission? I always seem to be a day late on the emails, they are already put through, I'm trying to be better,

my Mom leaves tomorrow so that will help. How is Rose? Sorry about the chat room, I will mention it to Joe again, he's working full time for IBM now, but maybehe can do something for us? Hang in there, and know you are in my prayers.

Marla

I finally got my computer back, and hopefully we're done with the repairs and virus

attack. For those who DO NOT have ANTI-VIRUS SOFTWARE on your computer-- please, PLEASE INVEST OR RESEARCH THE " FREE: ONES ONLINE.

Having to spend $150 to debug our computers is very difficult for all of us-- and replacing the system is even more expensive.

As for me, I have pneumonia -- again. The problem is that my upper right lung lobe is showing signs of severe fibrosis and can no longer clear fluid build up. The lower right lobe-- is collapsed and folded over onto itself-- so it hasn't functioned in several years. The upper left lobe is also showing signs of severe advancing fibrosis-- so I'm living on 2 working lobes. Right now there is no " infection " but there is literally cups of fluid keeping me from breathing. Next week I get another CT scan that hopefully will show us what to do next. I see the pulm on Thurs and I am hoping that he'll consider treatment directed at pulmonary fibrosis (IPF--Idiopathic Pulmonary Fibrosis) that does not include the steroids.

We know that pred does not work on me any more-- so why beat the dead horse. Other options may include me looking into lung/heart transplant or pallative care to keep me going as I am for as long as possible. It could be years that I still have-- or not.

I'm not about to give up, and so as I get settled in this week I'll be researching my options more thoroughly.

My blessings to all,

Tracie

NS Co-owner/moderatror

January 2, 2010

Marla, do you know what it costs for the website? I know he was paying something for it--the "domain" I believe he had registered. I'm not sure how that all works-- hasn't been in my schedule of things to deal with..

We ALL truly appreciate the time and effort and money that he has donated so that we could have a chatroom. I want to make sure he knows that it is truly appreciated.

Hugs back

Tracie

To: Neurosarcoidosis Cc: NSMods-owner Sent: Sat, January 2, 2010 11:04:30 AMSubject: Re: Tracie update

Tracie, I'm sorry you are going through so much, and I will keep you in my prayers, I hope they find somehting that can help you, I think of you often. I'm glad you got your computer up and running, I have been too busy with the holidays, and feeling it now, back on Methotrexate as the walking is getting worse. I'm glad there are drugs to help us, I just wish they would find drugs that would stop the progression, or put us in remission? I always seem to be a day late on the emails, they are already put through, I'm trying to be better, my Mom leaves tomorrow so that will help. How is Rose? Sorry about the chat room, I will mention it to Joe again, he's working full time for IBM now, but maybehe can do something for us? Hang in there, and know you are in my prayers. Marla

On Fri, Jan 1, 2010 at 6:08 PM, tracie feldhaus <tiodaat2001@ yahoo.com> wrote:

I finally got my computer back, and hopefully we're done with the repairs and virus attack. For those who DO NOT have ANTI-VIRUS SOFTWARE on your computer-- please, PLEASE INVEST OR RESEARCH THE "FREE: ONES ONLINE.

Having to spend $150 to debug our computers is very difficult for all of us-- and replacing the system is even more expensive.

As for me, I have pneumonia -- again. The problem is that my upper right lung lobe is showing signs of severe fibrosis and can no longer clear fluid build up. The lower right lobe-- is collapsed and folded over onto itself-- so it hasn't functioned in several years. The upper left lobe is also showing signs of severe advancing fibrosis-- so I'm living on 2 working lobes. Right now there is no "infection" but there is literally cups of fluid keeping me from breathing. Next week I get another CT scan that hopefully will show us what to do next. I see the pulm on Thurs and I am hoping that he'll consider treatment directed at pulmonary fibrosis (IPF--Idiopathic Pulmonary Fibrosis) that does not include the steroids.

We know that pred does not work on me any more-- so why beat the dead horse. Other options may include me looking into lung/heart transplant or pallative care to keep me going as I am for as long as possible. It could be years that I still have-- or not.

I'm not about to give up, and so as I get settled in this week I'll be researching my options more thoroughly.

My blessings to all,

Tracie

NS Co-owner/moderatror

January 2, 2010

Can someone recommend a free anti-virus software that I can download? Something that you've used and it works for you.... thanks S.Life is short...live it to the fullest...to your last living breath.Subject: Re: Tracie updateTo: "tracie feldhaus" , NSMods-owner , neurosarcoidosis Date: Saturday, January 2, 2010, 2:13 PM

Hi Tracie,

I am so glad you got your computer fixed and you are so right about

the Anti-Virus software! It seems to be so hard to get people to understand

that they NEED the software! There are several brands on the market and

there are some free ones. Personally, I LOVE Nortons and have used it

since about 1980 or so. It is not too expensive but it works great. There are

others out there, so PLEASE investigate them and all of you --- get one!

Tracie, you hang in there.......you are very strong and can whip this old

Sarc Monster! You have done so well so far and I know you can beat it. You

have a LOT of people praying for you (including me) and wishing you well.

You know we are here for you as you are always here for us. Please do keep

us posted......

Sending lots of love and hugs,

Darlene

NS Co-Owner/Moderator

January 2, 2010

Hey

My IT guy at the office recommends Malware Bytes. It has been working fine on my laptop and wife's desktop.

Subject: Re: Tracie updateTo: "tracie feldhaus" <tiodaat2001@ yahoo.com>, NSMods-owner@ yahoogroups. com, neurosarcoidosis@ yahoogroups. comDate: Saturday, January 2, 2010, 2:13 PM

Hi Tracie,

I am so glad you got your computer fixed and you are so right about

the Anti-Virus software! It seems to be so hard to get people to understand

that they NEED the software! There are several brands on the market and

there are some free ones. Personally, I LOVE Nortons and have used it

since about 1980 or so. It is not too expensive but it works great. There are

others out there, so PLEASE investigate them and all of you --- get one!

Tracie, you hang in there....... you are very strong and can whip this old

Sarc Monster! You have done so well so far and I know you can beat it. You

have a LOT of people praying for you (including me) and wishing you well.

You know we are here for you as you are always here for us. Please do keep

us posted......

Sending lots of love and hugs,

Darlene

NS Co-Owner/Moderator

January 3, 2010

Thanks, I downloaded that and the spyware one free. It was really quick! I couldn't get Tracie's site to work either time I tried. Thanks!!! Beats buying one. S.Life is short...live it to the fullest...to your last living breath.