Guest guest Posted November 18, 2009 Report Share Posted November 18, 2009 MY LUNG DOCTOR'S NURSE CALL ME TODAY TO GIVE ME THE RESULTS OF MY CAT SCAN.SHE INFORMED ME THAT I HAVE EMPHYSEMA AS WELL AS LUNG SARCORDOSIS.I can't see my lung doctor until December the 17TH.I NOW HAVE TWO DISEASES THAT DOESN''T HAVE A CURE.HELEN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2009 Report Share Posted November 18, 2009 Helen: My heart and prayers go out to YOU and your family. God Bless, June Heileman Subject: diagnosisTo: Neurosarcoidosis Date: Wednesday, November 18, 2009, 7:44 PM MY LUNG DOCTOR'S NURSE CALL ME TODAY TO GIVE ME THE RESULTS OF MY CAT SCAN.SHE INFORMED ME THAT I HAVE EMPHYSEMA AS WELL AS LUNG SARCORDOSIS. I can't see my lung doctor until December the 17TH.I NOW HAVE TWO DISEASES THAT DOESN''T HAVE A CURE. HELEN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2009 Report Share Posted November 18, 2009 Helen, Where you a smoker? Buggers-- See if the pulm will allow you into a pulmonary rehab class, where you can learn to breath deeply and correctly, so that the combination of Restrictive Obstructlve Pulmonary Disease (ROPD)-- AKA sarc; and COPD Chronic Obstructive; doesn't progress to even less lung volume. That wonderful exercise where they have us blow out past when we feel our lungs have emptied-- is what gets the carbon dioxide out of the lungs-- (that is what causes the extremity numbness alot of the time) and by doing that-- and starting a VERY SLOW exercise program under supervision-- you can get stronger. It may be time also to consider supplemental oxygen. I know how much it helps me-- You can look in the MESSAGE ARCHIVES and search by Pulmonary Rehab-- and you'll find a bunch of discussion on this issue. Take care, Tracie NS Co-owner/moderator To: Neurosarcoidosis Sent: Wed, November 18, 2009 4:44:14 PMSubject: diagnosis MY LUNG DOCTOR'S NURSE CALL ME TODAY TO GIVE ME THE RESULTS OF MY CAT SCAN.SHE INFORMED ME THAT I HAVE EMPHYSEMA AS WELL AS LUNG SARCORDOSIS. I can't see my lung doctor until December the 17TH.I NOW HAVE TWO DISEASES THAT DOESN''T HAVE A CURE. HELEN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2009 Report Share Posted November 19, 2009 Helen, I'm so sorry but if ever there were people that understand what your going through, here we are. I had a similar story as Tracie, i was told that it was 95% Non Hodkins (which my Father passed away from the year before) or Lung cancer and less then 5% chance of Sarcoid from the Cat Scan and then after the PEAT Scan I was told it was 100% Cancer. For 3 weeks I thought i had the same Cancer my Father died from less then 12 months earlier (it took me 8 months to get back into a semi-fairly life and then BOOM I'm dying. I have thought about this a million times in the last 3 years-- A Cancer that has a high success rate or an Auto immune that has no cure at all. you know what? I would take the Sarcoid every time, The word "Cancer" is a Cancer, for the 3 weeks i thought I had it I was always scared, shaking, crying and miserable. It was a relief not to have Cancer. Although they told me 3 times since then that the CT Scan looked Cancer but I don't take it seriously anymore. Anyway, we all know how hopeless it can feel but i always think of the old Confusous saying "I cried because I had no shoes, until I met a man who had no feet!" G-d Bless and we're here for you Mitch diagnosis MY LUNG DOCTOR'S NURSE CALL ME TODAY TO GIVE ME THE RESULTS OF MY CAT SCAN.SHE INFORMED ME THAT I HAVE EMPHYSEMA AS WELL AS LUNG SARCORDOSIS.I can't see my lung doctor until December the 17TH.I NOW HAVE TWO DISEASES THAT DOESN''T HAVE A CURE. HELEN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2009 Report Share Posted November 20, 2009 Hi Tracie,YES I AM A SMOKER AND HAVE BEEN FOR A LONG TIME.I WILL BUY SOME PRODUCTS TO HELP ME STOP TOMORROW.i KNOW I AM THE BLAME FOR THE EMPHYSEMA AND I WILL DEAL WITH WHAT I HAVE DONE TO MY BODY.I WILL TRY TO FORGIVE MYSELF AND FIND OTHER MEANS OF DEALING WITH STRESS AND PROBLEMS.THANK YOU ALL FOR BEING SUPPORTIVE AND SHARING YOUR LIVES OF SARC WITH ME.I EXPECT SOME CRITICISM FOR SMOKING AND I AM OK WITH IT. IT IS NOT A HABIT IS.IT IS A STRONG ADDICTION THAT IS HARD LIKE A DRUG ADDICTION.I OFTEN THINK I AM GOING TO DIE SOONER BECAUSE THE SARCORDOSIS IS IN MY BRAIN,LUNGS,EYES AND BONES,NOW THE EMPHYSEMA.I WILL START RECEIVING A IV FOR THREE CONSECTATIVE DAYS FOR THREE HOURS EACH DAY TO STRENGTHEN MY IMMUNE SYSTEM AND INCREASE MY PLATELET COUNT.AGAIN THAT ALL OF YOU FOR YOUR SUPPORT AND PRAYERS.HELENSubject: Re: diagnosisTo: Neurosarcoidosis Date: Thursday, November 19, 2009, 1:32 AM Helen, Where you a smoker? Buggers-- See if the pulm will allow you into a pulmonary rehab class, where you can learn to breath deeply and correctly, so that the combination of Restrictive Obstructlve Pulmonary Disease (ROPD)-- AKA sarc; and COPD Chronic Obstructive; doesn't progress to even less lung volume. That wonderful exercise where they have us blow out past when we feel our lungs have emptied-- is what gets the carbon dioxide out of the lungs-- (that is what causes the extremity numbness alot of the time) and by doing that-- and starting a VERY SLOW exercise program under supervision- - you can get stronger. It may be time also to consider supplemental oxygen. I know how much it helps me-- You can look in the MESSAGE ARCHIVES and search by Pulmonary Rehab-- and you'll find a bunch of discussion on this issue. Take care, Tracie NS Co-owner/moderator From: Helen <hmwalker9 (AT) yahoo (DOT) com>To: Neurosarcoidosis@ yahoogroups. comSent: Wed, November 18, 2009 4:44:14 PMSubject: diagnosis MY LUNG DOCTOR'S NURSE CALL ME TODAY TO GIVE ME THE RESULTS OF MY CAT SCAN.SHE INFORMED ME THAT I HAVE EMPHYSEMA AS WELL AS LUNG SARCORDOSIS. I can't see my lung doctor until December the 17TH.I NOW HAVE TWO DISEASES THAT DOESN''T HAVE A CURE. HELEN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2009 Report Share Posted November 20, 2009 JUNE,THANK YOU FOR KIND WORDS AND PRAYERS.THANKS AGAIN.AS YOUR DAY SO MAY YOUR STRENGTH BEHELEN From: Helen <hmwalker9 (AT) yahoo (DOT) com>Subject: diagnosisTo: Neurosarcoidosis@ yahoogroups. comDate: Wednesday, November 18, 2009, 7:44 PM MY LUNG DOCTOR'S NURSE CALL ME TODAY TO GIVE ME THE RESULTS OF MY CAT SCAN.SHE INFORMED ME THAT I HAVE EMPHYSEMA AS WELL AS LUNG SARCORDOSIS. I can't see my lung doctor until December the 17TH.I NOW HAVE TWO DISEASES THAT DOESN''T HAVE A CURE. HELEN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2009 Report Share Posted November 20, 2009 MITCH,THANK YOU .I READ YOUR LETTER TO THE GROUP WHEN YOU POSTED IT. I HOPED THAT YOU WERE DOING ALL RIGHT.I AM SO SORRY YOU HAD TO GO THROUGH THE WRONG DIAGNOSIS YET I AM GLAD YOU HAVE NEUROSARCOIDOSIS NOT THAT IT IS ANY BETTER.AGAIN THANKS FOR CARIG ENOUGH TO RESPOND.CANCER IS MY GREATEST FEAR YET I KNOW GOD IS ABLE TO HEAL AND OR GUIDE ME THROUGH WHAT EVER COMES MY WAY,EVEN WHEN I HAVE LITTLE FAITH.AGAIN THANKS MITCH.HELENSubject: Re: diagnosisTo: Neurosarcoidosis Date: Thursday, November 19, 2009, 9:09 AM Helen, I'm so sorry but if ever there were people that understand what your going through, here we are. I had a similar story as Tracie, i was told that it was 95% Non Hodkins (which my Father passed away from the year before) or Lung cancer and less then 5% chance of Sarcoid from the Cat Scan and then after the PEAT Scan I was told it was 100% Cancer. For 3 weeks I thought i had the same Cancer my Father died from less then 12 months earlier (it took me 8 months to get back into a semi-fairly life and then BOOM I'm dying. I have thought about this a million times in the last 3 years-- A Cancer that has a high success rate or an Auto immune that has no cure at all. you know what? I would take the Sarcoid every time, The word "Cancer" is a Cancer, for the 3 weeks i thought I had it I was always scared, shaking, crying and miserable. It was a relief not to have Cancer. Although they told me 3 times since then that the CT Scan looked Cancer but I don't take it seriously anymore. Anyway, we all know how hopeless it can feel but i always think of the old Confusous saying "I cried because I had no shoes, until I met a man who had no feet!" G-d Bless and we're here for you Mitch diagnosis MY LUNG DOCTOR'S NURSE CALL ME TODAY TO GIVE ME THE RESULTS OF MY CAT SCAN.SHE INFORMED ME THAT I HAVE EMPHYSEMA AS WELL AS LUNG SARCORDOSIS. I can't see my lung doctor until December the 17TH.I NOW HAVE TWO DISEASES THAT DOESN''T HAVE A CURE. HELEN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2009 Report Share Posted November 21, 2009 Helen, For any of us to blame ourself for ending up sick is just wasted energy. Energy you need to be healthy. So you are right-- don't beat yourself up over the emphysema. For those who end up being criticized for the choices we made in our youth-- and smoking was surely one of the main "attractions" to be part of the "in" crowd-- and that was long before we knew how bad it was-- and decades before the reality that the cigarette companies had added junk to the cigarettes to make them even more addictive. Even with sarc being so multi-system for so many of us, it will end up being the "secondary" cause of death. Heart failure, pulmonary embolisms, bacterial infections that aren't caught in time-- will probably be the info on the death certificate. Yes, I know this is morbid. I apologize, but it is reality. The other part of that reality is that you will most likely live a very long time with sarcoidosis. So my suggestion for all of us-- pull up the bootstraps and LIVE! Find something you enjoy doing, and do it. The more we focus on the losses, the bigger they become, and the smaller our world becomes. We don't deserve that. As for those who need to pass blame or judgement-- just give them a smile and say, "You know, even in your ignorance, I still love you." Shuts em up quick. Celebrate the small pleasures, Tracie NS Co-owner/moderator To: Neurosarcoidosis Sent: Fri, November 20, 2009 9:53:01 PMSubject: Re: diagnosis Hi Tracie,YES I AM A SMOKER AND HAVE BEEN FOR A LONG TIME.I WILL BUY SOME PRODUCTS TO HELP ME STOP TOMORROW.i KNOW I AM THE BLAME FOR THE EMPHYSEMA AND I WILL DEAL WITH WHAT I HAVE DONE TO MY BODY.I WILL TRY TO FORGIVE MYSELF AND FIND OTHER MEANS OF DEALING WITH STRESS AND PROBLEMS.THANK YOU ALL FOR BEING SUPPORTIVE AND SHARING YOUR LIVES OF SARC WITH ME.I EXPECT SOME CRITICISM FOR SMOKING AND I AM OK WITH IT. IT IS NOT A HABIT IS.IT IS A STRONG ADDICTION THAT IS HARD LIKE A DRUG ADDICTION.I OFTEN THINK I AM GOING TO DIE SOONER BECAUSE THE SARCORDOSIS IS IN MY BRAIN,LUNGS, EYES AND BONES,NOW THE EMPHYSEMA.I WILL START RECEIVING A IV FOR THREE CONSECTATIVE DAYS FOR THREE HOURS EACH DAY TO STRENGTHEN MY IMMUNE SYSTEM AND INCREASE MY PLATELET COUNT.AGAIN THAT ALL OF YOU FOR YOUR SUPPORT AND PRAYERS. HELEN From: tracie feldhaus <tiodaat2001@ yahoo.com>Subject: Re: diagnosisTo: Neurosarcoidosis@ yahoogroups. comDate: Thursday, November 19, 2009, 1:32 AM Helen, Where you a smoker? Buggers-- See if the pulm will allow you into a pulmonary rehab class, where you can learn to breath deeply and correctly, so that the combination of Restrictive Obstructlve Pulmonary Disease (ROPD)-- AKA sarc; and COPD Chronic Obstructive; doesn't progress to even less lung volume. That wonderful exercise where they have us blow out past when we feel our lungs have emptied-- is what gets the carbon dioxide out of the lungs-- (that is what causes the extremity numbness alot of the time) and by doing that-- and starting a VERY SLOW exercise program under supervision- - you can get stronger. It may be time also to consider supplemental oxygen. I know how much it helps me-- You can look in the MESSAGE ARCHIVES and search by Pulmonary Rehab-- and you'll find a bunch of discussion on this issue. Take care, Tracie NS Co-owner/moderator From: Helen <hmwalker9 (AT) yahoo (DOT) com>To: Neurosarcoidosis@ yahoogroups. comSent: Wed, November 18, 2009 4:44:14 PMSubject: diagnosis MY LUNG DOCTOR'S NURSE CALL ME TODAY TO GIVE ME THE RESULTS OF MY CAT SCAN.SHE INFORMED ME THAT I HAVE EMPHYSEMA AS WELL AS LUNG SARCORDOSIS. I can't see my lung doctor until December the 17TH.I NOW HAVE TWO DISEASES THAT DOESN''T HAVE A CURE. HELEN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2009 Report Share Posted November 24, 2009 I went from 180 (my perfect weight) to 235 in 3 years on prednisone. in the begriming I gave in to all my cravings (lol i still do) but all I ate and wanted to eat were Corned beef and Pastrami Sandwiches. 4 times a day with a knish with each one (no wonder I blew up) The only noticeable weight I lost was recently when I was down to 10 mg of Pred and my oldest son left for college. With worrying about him being away and the drinking I dropped to 205.6 last week. Now I'm back on 40mg and feel it coming back right before the holiday's no less. Can't exercise which as Marla said is essential. But it will work out for all of us. G-d only gives us what we can handle! Some times I think he has too much faith in me!!!! lol G-d Bless, Mitch Ps I thought I was the only one in the world who went through that experience until I recently found many others and found I'm not alone. And though I feel really bad for all those on this board, it is comforting having someone empathize instead of sympathizing diagnosis MY LUNG DOCTOR'S NURSE CALL ME TODAY TO GIVE ME THE RESULTS OF MY CAT SCAN.SHE INFORMED ME THAT I HAVE EMPHYSEMA AS WELL AS LUNG SARCORDOSIS. I can't see my lung doctor until December the 17TH.I NOW HAVE TWO DISEASES THAT DOESN''T HAVE A CURE. HELEN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2009 Report Share Posted November 24, 2009 Thank you, Marla, for your advice. I can walk, but it is very awkward because I have to use a platform walker or a cane. Lately my hands have been too painful to hold on to either one very effectively. I will give it a try. I was told by my cousin to try licorice capsules to boos the indocrine (?) system. I'll try just about anything!Have a great holiday!()/ From: mjcv29a (AT) aol (DOT) com <mjcv29a (AT) aol (DOT) com>Subject: Re: diagnosisTo: Neurosarcoidosis@ yahoogroups. com Date: Thursday, November 19, 2009, 3:09 PM Helen, I'm so sorry but if ever there were people that understand what your going through, here we are. I had a similar story as Tracie, i was told that it was 95% Non Hodkins (which my Father passed away from the year before) or Lung cancer and less then 5% chance of Sarcoid from the Cat Scan and then after the PEAT Scan I was told it was 100% Cancer. For 3 weeks I thought i had the same Cancer my Father died from less then 12 months earlier (it took me 8 months to get back into a semi-fairly life and then BOOM I'm dying.. I have thought about this a million times in the last 3 years-- A Cancer that has a high success rate or an Auto immune that has no cure at all. you know what? I would take the Sarcoid every time, The word "Cancer" is a Cancer, for the 3 weeks i thought I had it I was always scared, shaking, crying and miserable. It was a relief not to have Cancer. Although they told me 3 times since then that the CT Scan looked Cancer but I don't take it seriously anymore. Anyway, we all know how hopeless it can feel but i always think of the old Confusous saying "I cried because I had no shoes, until I met a man who had no feet!" G-d Bless and we're here for you Mitch diagnosis MY LUNG DOCTOR'S NURSE CALL ME TODAY TO GIVE ME THE RESULTS OF MY CAT SCAN.SHE INFORMED ME THAT I HAVE EMPHYSEMA AS WELL AS LUNG SARCORDOSIS. I can't see my lung doctor until December the 17TH..I NOW HAVE TWO DISEASES THAT DOESN''T HAVE A CURE. HELEN Quote Link to comment Share on other sites More sharing options...
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