Guest guest Posted September 9, 2009 Report Share Posted September 9, 2009 Tracie, I was just going to write you and thank you again for your invaluable advice. I hate I bothered you when you felt so bad, but you were a God send. The mucinex DM has helped tremendously, as well as the other advice. The screaming shortness of breath has backed up, and I am at a level I can tolerate pretty good. You will be in mine and my families prayers, with a vengence. Please take care, you do so much good with so little strength. You are appreciated.....connie Subject: Tracie UpdateTo: neurosarcoidosis , nsmods Date: Wednesday, September 9, 2009, 3:55 AM 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2009 Report Share Posted September 9, 2009 I have your back sarc friends also, tag here too. connie Subject: Re: Tracie UpdateTo: Neurosarcoidosis Date: Wednesday, September 9, 2009, 10:56 AM 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2009 Report Share Posted September 23, 2009 Tracie, Sorry i haven't posted much lately. It bothers me, too, when people don't try to take better care of themselves. I've had so many relatives die of lung cancer and many of them smoked until the end. Personally, I have been so tired/fatigued lately that I can barely get a few things done around the house. I was just thinking earlier today that I should post here more often. Thanks for reminding me. I bought a few new books for my Kindle DX(love it!!!) and a couple were on fibromyalgia. Most of the rheumys I've seen(and a few others) think I have that along with sarc. But FM treatments aren't all the same either so I'm reading and letting it sink in my brain before deciding what to do...if anything. Since they aren't treating it like it's sarcoid(though it surely may be) and I still need treatment at times I have to follow-up with what I can. Common sense seems relative in the medical field. I am still on NutriSystem (the diabetic plan) cuz it helps when I don't feel well...Just nuke it a minute and I'm good to go. I haven't cooked in 9 or 10 years. My blood sugars are much better. My allergies are acting up this week and this morning it felt like someone kicked me in the side of the neck. I haven't had the energy to call the ENT back and see what the blood tests results were yet. I appreciate all your wisdom... 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 > > Subject: Tracie Update > To: neurosarcoidosis , nsmods , NSMods-owner > Date: Wednesday, September 23, 2009, 9:20 PM > > > 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 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2009 Report Share Posted September 23, 2009 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2010 Report Share Posted January 4, 2010 be strong Tracie! 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 Yahoo! Canada Toolbar : Search from anywhere on the web and bookmark your favourite sites. Download it now! Quote Link to comment Share on other sites More sharing options...
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