Guest guest Posted June 23, 2009 Report Share Posted June 23, 2009 Tracie, I really hate to hear that you are having all these problems. Having neurosarc is ENOUGH --- none of us need anything more. However, it seems that we are targets for about everything. You take your time and get better.............we will be fine. Rose has been pretty active and Debbie is when she can.....I have not heard from lately but I may have missed some emails. My computer died and I had to get a new one and I lost several emails..........so I have probably missed seeing her. I hope you get the diabetes straightened out soon... I know that is a real problem. You take care and know that we think of you every day and miss you. Lots and lots of hugs, Darlene NS Co-Owner/Moderator Tracie update Guys, I'm still gone. Last week I ended up with a pier pole halting my backwards motion as I backed out of a parking space in a poorly lit underground parking structure. So, I'm dealing with a whiplash.... The neuro thinks my neuropathy is more from the diabetes-- and that it may reverse itself somewhat when we have that issue under better control. I do hope he's right. I am having problems with pericarditis again, and the bronchial infection did not clear up with the Levaquin--- so it's back to a second culture (the first one was bad, no one notified me, so we're back at square one to start over) so that we can find an antibiotic that will knock this out-- Know you are all in my prayers, and I'll be back when I get here. Blessings, Tracie NS Co-owner/moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2009 Report Share Posted June 25, 2009 Tracie, sorry to hear about your accident. i hope you're doing better. I hope they figure out the right antibiotic for you soon, too. It's all such a bother but we still have to try, don't we. It really bothers me that they don't do better follow-up. i often have to call several times to check on tests. And even then they hardly know what's going on. Hang in there and rest as much as you can. You're in my prayers! 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)."No one whose hope is in You will ever be put to shame….Show me Your ways, O LORD, teach me Your paths; guide me in Your truth and teach me, for You are God my Savior, and My hope is in You all day long." Psalm 25:3,4,5 NIV--- On Tue, 6/23/09, tracie feldhaus wrote:Subject: Tracie updateTo: NSMods-owner , "Neurosarcoidosis" <Neurosarcoidosis >Date: Tuesday, June 23, 2009, 10:15 PM Guys, I'm still gone. Last week I ended up with a pier pole halting my backwards motion as I backed out of a parking space in a poorly lit underground parking structure. So, I'm dealing with a whiplash.... The neuro thinks my neuropathy is more from the diabetes-- and that it may reverse itself somewhat when we have that issue under better control. I do hope he's right. I am having problems with pericarditis again, and the bronchial infection did not clear up with the Levaquin--- so it's back to a second culture (the first one was bad, no one notified me, so we're back at square one to start over) so that we can find an antibiotic that will knock this out-- Know you are all in my prayers, and I'll be back when I get here. Blessings, Tracie NS Co-owner/moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2009 Report Share Posted June 26, 2009 You know, Tracie, I hate it when poles & walls just jump out in front of me! Did it do much damage to your car? Just take the time you need, and maybe we'll send the Krumdawg over to talk some sense into your lungs. Who knows? If talking to plants works, why not try talking to our organs? Stay cool, kiddo. Ramblin' RoseModerator "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 Carver To: NSMods-owner ; Neurosarcoidosis From: tiodaat2001@...Date: Tue, 23 Jun 2009 15:15:54 -0700Subject: Tracie update Guys, I'm still gone. Last week I ended up with a pier pole halting my backwards motion as I backed out of a parking space in a poorly lit underground parking structure. So, I'm dealing with a whiplash.... The neuro thinks my neuropathy is more from the diabetes-- and that it may reverse itself somewhat when we have that issue under better control. I do hope he's right. I am having problems with pericarditis again, and the bronchial infection did not clear up with the Levaquin--- so it's back to a second culture (the first one was bad, no one notified me, so we're back at square one to start over) so that we can find an antibiotic that will knock this out-- Know you are all in my prayers, and I'll be back when I get here. Blessings, Tracie NS Co-owner/moderator found her dream laptop. Find the PC that’s right for you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2010 Report Share Posted January 1, 2010 Take care of yourself Tracie. Keep up the good fight.MattSubject: Tracie updateTo: NSMods-owner , neurosarcoidosis Date: Friday, January 1, 2010, 8:08 PM 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2010 Report Share Posted January 1, 2010 Hang in there, Tracie - I Love you! Tracie update To: NSMods-owner , neurosarcoidosis Date: Friday, January 1, 2010, 8:08 PM 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2010 Report Share Posted January 2, 2010 I'm so proud of you for not giving into the "demon" monster. My love and prayers to you and your loved ones From: tracie feldhaus <tiodaat2001@ yahoo.com>Subject: Tracie updateTo: NSMods-owner@ yahoogroups. com, neurosarcoidosis@ yahoogroups. comDate: Friday, January 1, 2010, 8:08 PM 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2010 Report Share Posted January 2, 2010 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2010 Report Share Posted January 2, 2010  Thinking of you Tracie. Jackie Tracie updateTo: NSMods-owner , neurosarcoidosis Date: Friday, January 1, 2010, 8:08 PM 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2010 Report Share Posted March 17, 2010 please rest and take it easy the next couple days .. you are in my thoughts...many hugs Many blessings and a pain free day Please support Neurosarcoidosis society Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2010 Report Share Posted April 13, 2010 Tracie You have improved my life considerably. I'll be praying for your speedy recovery. Please let me know if you need anything. me Subject: Tracie updateTo: NSMods-owner , nsmods , neurosarcoidosis Date: Monday, April 12, 2010, 10:57 PM Gys, I am still sicker than a dead dog-- and I am totally out of energy. I have been having some serious arm and shoulder pain that is probably heart related-- i get the results of last Fri echocardiogram on the 20th. I had to break down and do another 12 days of tapering prednisone and that is harder on me than any of the other meds. Wed is Remicade-- so I'm visualizing relief! Every lymphnode in my body is on full alert-- and I'm having to turn to morphine for pain relief. I am turning the group over to your care-- and knowledge-- until I can get myself put back together. My love to all, Tracie NS Co-owner/moderator Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.