Guest guest Posted June 11, 2009 Report Share Posted June 11, 2009 Thanks for the suggestions! I actually find it therapeutic to visit other shut-ins...I have about 4 that I visit on a regular basis and I assist them as I am able. I tell you they are truly a blessing. :-) -- New Goals Hi y'all, Just an update on me Krumdawg (Greg). Yeaterday able to ride stationary bike for 10 minutes each three times, without losing balance and falling off. Happy happy Greg. Will start increase time on stationary Bike. Will rebuild my endurance and then Start a good ole Army PT Program to get rid of this Prednisone bloat. Yes, all I will take it easy and start slow. I know I am not the young trooper I use to be. OO and Rose I think I will save up for a Recumbent trike. Priced them out and they are twice as expensive as my Mountain bike. Plus need to get under 250 lbs. (and I am on my way) or the ones for heavy people are even more expensive. Will update y'all in a few weeks and let you know if I successfully increased my endurance and if I have started my PT Program. Thank you all for all the advice and prayers I recieved in the past few months. They have really made a difference in my like and I am very thank ful to all my new friends. May you all have as many aspossible Pain free and loving dyas. Greg aka Krumdawg ------------ --------- --------- ------ ~~~~ *** ~~~ *** ~~~ *** ~~~~ 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2009 Report Share Posted June 12, 2009 I have had my ventricle in the front closed from the granuales, got a shunt, the grans clogged that after 9 years, got another shunt & my 4th ventricle is clogging up. It's STILL NOT A DEATH SENTENCE! I know how off the wall I get and my family knows when they need to get down and check me over in person! The support system you set up and call someone daily and let them know when to come check you in person isn't what we expect as an adult but it's one of the most important things to keep us (or at least me) alive and a little weller. Yea, I get depressed too but I put in a chick flick & cry my way through it. It may not be an answer for everyone but it sure works for me!Join our Sock Challenge for Orphans in Kazakhstan http://groups. yahoo.com/ group/Mittens_ for_Akkol/ grannylunatic@... Subject: Re: New GoalsTo: Neurosarcoidosis Date: Wednesday, June 10, 2009, 10:54 PM Hello everyone...and I've been attempting to exercise more also Greg but with my neuropathy I can't for long wow this disease affects us in so many different ways I went to the emergency room due to this severe throbbing I feel at the top and back of my head and after a cat scan they discovered granules on my brain. What next? Death. Sorry but in one of those moods. -- New Goals Hi y'all, Just an update on me Krumdawg (Greg). Yeaterday able to ride stationary bike for 10 minutes each three times, without losing balance and falling off. Happy happy Greg. Will start increase time on stationary Bike. Will rebuild my endurance and then Start a good ole Army PT Program to get rid of this Prednisone bloat. Yes, all I will take it easy and start slow. I know I am not the young trooper I use to be. OO and Rose I think I will save up for a Recumbent trike. Priced them out and they are twice as expensive as my Mountain bike. Plus need to get under 250 lbs. (and I am on my way) or the ones for heavy people are even more expensive. Will update y'all in a few weeks and let you know if I successfully increased my endurance and if I have started my PT Program. Thank you all for all the advice and prayers I recieved in the past few months. They have really made a difference in my like and I am very thank ful to all my new friends. May you all have as many aspossible Pain free and loving dyas. Greg aka Krumdawg ------------ --------- --------- ------ ~~~~ *** ~~~ *** ~~~ *** ~~~~ 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2009 Report Share Posted June 12, 2009 Bonnie, I bought one of those bikes a " cruiser " about 3 years ago, and rode it about maybe 5 times, my husbands says only once, I am now unable to push the pedals, it sits out in the snow all winter, rusted, seat split from the cold, my daughters bike too, I wish we could put them in the garage, but NO that's where the HE man lawn mower sits, and it's so big, it caught my bumper one daybacking out, and pulled the bumper almost all the way off, and still we don't move it, guess I better stop here, I could go on and on. I wish I could ride my bike. Marl a yea Greg!!Good for you!!I it's so hard to get back in the game after a sarc time out. We all know the struggle to keep going on when the pain make you want to quit. Just take it slow, slow and steady wins the race,as they say.. On another note, I saw old fashioned, beach bikes at Walmart. The kind with no hand brakes, chrome bumpers, nice size seat and one speed. Yes, they still make them. I think that would be my bike of choice, but I have one to start on. Doesn't that bring back memories?? Oh, I'm sorry, you may be a young'un, and not have a clue about the bikes of the olden days.... lol. BonnieB New Goals Hi y'all, Just an update on me Krumdawg (Greg). Yeaterday able to ride stationary bike for 10 minutes each three times, without losing balance and falling off. Happy happy Greg. Will start increase time on stationary Bike. Will rebuild my endurance and then Start a good ole Army PT Program to get rid of this Prednisone bloat. Yes, all I will take it easy and start slow. I know I am not the young trooper I use to be. OO and Rose I think I will save up for a Recumbent trike. Priced them out and they are twice as expensive as my Mountain bike. Plus need to get under 250 lbs. (and I am on my way) or the ones for heavy people are even more expensive. Will update y'all in a few weeks and let you know if I successfully increased my endurance and if I have started my PT Program. Thank you all for all the advice and prayers I recieved in the past few months. They have really made a difference in my like and I am very thank ful to all my new friends. May you all have as many aspossible Pain free and loving dyas. Greg aka Krumdawg Dell Inspiron 15 Laptop: Now in 6 vibrant colors! Shop Dell's full line of laptops. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2009 Report Share Posted June 13, 2009 The support system you set up and call someone daily and let them know when to come check you in person isn't what we expect as an adult but it's one of the most important things to keep us (or at least me) alive and a little weller. What I meant to say is THEY'LL KNOW WHEN TO COME CHECK ON YOU IN PERSON. When the pressure is up in my brain from the fluid I sit in front of the tv arguing with the program like they're real people, not just your normal fusing with the crap on tv. Last time I was trying to convince the officer on COPS that I wasn't drunk! LOL It's funny now but it was a clue to my daughter back then. Join our Sock Challenge for Orphans in Kazakhstan http://groups. yahoo.com/ group/Mittens_ for_Akkol/ grannylunatic@... From: Ministry <jackie3740 (AT) indy (DOT) rr.com>Subject: Re: New GoalsTo: Neurosarcoidosis@ yahoogroups. comDate: Wednesday, June 10, 2009, 10:54 PM Hello everyone...and I've been attempting to exercise more also Greg but with my neuropathy I can't for long wow this disease affects us in so many different ways I went to the emergency room due to this severe throbbing I feel at the top and back of my head and after a cat scan they discovered granules on my brain. What next? Death. Sorry but in one of those moods. -- New Goals Hi y'all, Just an update on me Krumdawg (Greg). Yeaterday able to ride stationary bike for 10 minutes each three times, without losing balance and falling off. Happy happy Greg. Will start increase time on stationary Bike. Will rebuild my endurance and then Start a good ole Army PT Program to get rid of this Prednisone bloat. Yes, all I will take it easy and start slow. I know I am not the young trooper I use to be. OO and Rose I think I will save up for a Recumbent trike. Priced them out and they are twice as expensive as my Mountain bike. Plus need to get under 250 lbs. (and I am on my way) or the ones for heavy people are even more expensive. Will update y'all in a few weeks and let you know if I successfully increased my endurance and if I have started my PT Program. Thank you all for all the advice and prayers I recieved in the past few months. They have really made a difference in my like and I am very thank ful to all my new friends. May you all have as many aspossible Pain free and loving dyas. Greg aka Krumdawg ------------ --------- --------- ------ ~~~~ *** ~~~ *** ~~~ *** ~~~~ 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2009 Report Share Posted June 14, 2009 Rose, If you don't mind me asking, what were you on the Remeron for? My psych dr wants to put me on it, but I don't like the sound of the side effects... Thanks, Debbie Subject: RE: Re: New GoalsTo: neurosarcoidosis Date: Thursday, June 11, 2009, 11:10 AM Greg, I gained about 90# on the Pred, along with Remeron; went from 173 (I'm about 5'10") to 261. After about 3 years, I had dropped 60-65#. I've kind of plateaued at 195-200. What helped me finally drop some weight was the South Beach diet. I didn't buy the book; just got the basic info off the Internet. What it did for me was break my carb craving. It wasn't nearly as difficult as I expected. The first 2 weeks you cut out almost all carbs, then start adding some back. I don't remember the website I used, but it even provided a grocery list for Stage One. I just used that & bought the stuff I liked. A couple of times since then I've gone back to stage one for a week or two, just to get back on track. I think that if I really stayed on the plan, plus exercising as much as I can, that I could lose a few more pounds, especially in the mid-section. That's what I need to do, because that's the part that's hard on the heart. Yep, gonna dig out my papers & start that today! Thanks for the inspiration, dude! Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 "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: Neurosarcoidosis@ yahoogroups. com> From: krumdawg (AT) tx (DOT) rr.com> Date: Thu, 11 Jun 2009 14:34:27 +0000> Subject: Re: New Goals> > BonnieB, Yes I am Young (in Heart), But I do remember those bikes. Heck I even remember when therer was only Back n White TV in my house. I remember fondly when Pin Ball was the video games. It is the short term memory I have trouble with I don't remember yesterday except for glimsps. Heck I forgot th PIN I had for my money card yesterday (wrote a note about it to me self). I plan to take it slow. Learned my mistake the first time. A month in the hospital then a month at home and decided I would push myself to getting well. Well the granunomlas around my brain and brain stem srunk down and I thought I was cured. Well 3 months later the came back with a vengence. So I will take it slow and make sure of my processes. It is my desire to get to and maintain remission. I am Pre Diabetic due to that ------------ --------- --------- --------- --------- - Prednisone. So I need exercise and diet to control that also. I was always active and I thought I was healthy Prior to Neurosarcoidosis. Its been hard to realize how much this thing has changed my life. I took alot to face these changes and learn to work with and around them. I will never be that power lifting soldier I use to be. But I learned I can get close to it and it can help me control this and workouts (good hard and exhausting ones)make me feel better. I know getting back on the trails and road on abike will help me feel even more normal (though I know the spoon theory and I apply it to things I do). Well y'all sorry for going off such wild tangents in this response. I guess I need to remend myself where I am at right now.> > Blessings and good thoughts to all, > > Greg aka Krumdawg> > > > >> > > > yea Greg!!Good for you!!I? it's so hard to get back in the game after a sarc time out. We all know the struggle to keep going on when the pain make you want to quit. Just take it slow, slow and steady wins the race,as they say.. > > ? On another note, I saw old fashioned, beach bikes at Walmart. The kind with no hand brakes, chrome bumpers, nice size seat and one speed. Yes, they still make them. I think that would be my bike of choice, but I have one to start on. Doesn't that bring back memories?? Oh, I'm sorry, you may be a young'un, and not have a clue about the bikes of the olden days.... lol.? BonnieB> > > > > > > > > > > > > > > > New Goals> > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Hi y'all,> > > > > > > > Just an update on me Krumdawg (Greg). Yeaterday able to ride stationary bike for 10 minutes each three times, without losing balance and falling off. Happy happy Greg. Will start increase time on stationary Bike. Will rebuild my endurance and then Start a good ole Army PT Program to get rid of this Prednisone bloat. Yes, all I will take it easy and start slow. I know I am not the young trooper I use to be. OO and Rose I think I will save up for a Recumbent trike. Priced them out and they are twice as expensive as my Mountain bike. Plus need to get under 250 lbs. (and I am on my way) or the ones for heavy people are even more expensive. Will update y'all in a few weeks and let you know if I successfully increased my endurance and if I have started my PT Program. > > > > > > > > Thank you all for all the advice and prayers I recieved in the past few months. They have really made a difference in my like and I am very thank ful to all my new friends.> > > > > > > > May you all have as many aspossible Pain free and loving dyas.> > > > > > > > Greg aka Krumdawg> >> > > > > ------------ --------- --------- ------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> 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 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2009 Report Share Posted June 14, 2009 Greg, I was also a very active person prior to sarc. Worked out almost every day, hiked, biked , etc. I miss the old days. With your messages lately, it has inspired me to try again to start do some exercising. (In the past, I have tried and failed due to pain.) But I am starting out real slow and hope to build up. I miss my old body, my previous muscle has been turning to fat! Gross.... THanks for the inspiration, Debbie Subject: Re: New GoalsTo: Neurosarcoidosis Date: Thursday, June 11, 2009, 10:34 AM BonnieB, Yes I am Young (in Heart), But I do remember those bikes. Heck I even remember when therer was only Back n White TV in my house. I remember fondly when Pin Ball was the video games. It is the short term memory I have trouble with I don't remember yesterday except for glimsps. Heck I forgot th PIN I had for my money card yesterday (wrote a note about it to me self). I plan to take it slow. Learned my mistake the first time. A month in the hospital then a month at home and decided I would push myself to getting well. Well the granunomlas around my brain and brain stem srunk down and I thought I was cured. Well 3 months later the came back with a vengence. So I will take it slow and make sure of my processes. It is my desire to get to and maintain remission. I am Pre Diabetic due to that ------------ --------- --------- --------- --------- - Prednisone. So I need exercise and diet to control that also. I was always active and I thought I was healthy Prior to Neurosarcoidosis. Its been hard to realize how much this thing has changed my life. I took alot to face these changes and learn to work with and around them. I will never be that power lifting soldier I use to be. But I learned I can get close to it and it can help me control this and workouts (good hard and exhausting ones)make me feel better. I know getting back on the trails and road on abike will help me feel even more normal (though I know the spoon theory and I apply it to things I do). Well y'all sorry for going off such wild tangents in this response. I guess I need to remend myself where I am at right now.Blessings and good thoughts to all, Greg aka Krumdawg>> > yea Greg!!Good for you!!I? it's so hard to get back in the game after a sarc time out. We all know the struggle to keep going on when the pain make you want to quit. Just take it slow, slow and steady wins the race,as they say.. > ? On another note, I saw old fashioned, beach bikes at Walmart. The kind with no hand brakes, chrome bumpers, nice size seat and one speed. Yes, they still make them. I think that would be my bike of choice, but I have one to start on. Doesn't that bring back memories?? Oh, I'm sorry, you may be a young'un, and not have a clue about the bikes of the olden days.... lol.? BonnieB> > > > > > > > New Goals> > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Hi y'all,> > > > Just an update on me Krumdawg (Greg). Yeaterday able to ride stationary bike for 10 minutes each three times, without losing balance and falling off. Happy happy Greg. Will start increase time on stationary Bike. Will rebuild my endurance and then Start a good ole Army PT Program to get rid of this Prednisone bloat. Yes, all I will take it easy and start slow. I know I am not the young trooper I use to be. OO and Rose I think I will save up for a Recumbent trike. Priced them out and they are twice as expensive as my Mountain bike. Plus need to get under 250 lbs. (and I am on my way) or the ones for heavy people are even more expensive. Will update y'all in a few weeks and let you know if I successfully increased my endurance and if I have started my PT Program. > > > > Thank you all for all the advice and prayers I recieved in the past few months. They have really made a difference in my like and I am very thank ful to all my new friends.> > > > May you all have as many aspossible Pain free and loving dyas.> > > > Greg aka Krumdawg> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2009 Report Share Posted June 14, 2009 Debbie, You are most welcome, I have been inspired by by our brothers and sisters in this group. So if I can pass it on then good. Good morning to you and may it be a blessed for you. Greg > > > > > > yea Greg!!Good for you!!I? it's so hard to get back in the game after a sarc time out. We all know the struggle to keep going on when the pain make you want to quit. Just take it slow, slow and steady wins the race,as they say.. > > ? On another note, I saw old fashioned, beach bikes at Walmart. The kind with no hand brakes, chrome bumpers, nice size seat and one speed. Yes, they still make them. I think that would be my bike of choice, but I have one to start on. Doesn't that bring back memories?? Oh, I'm sorry, you may be a young'un, and not have a clue about the bikes of the olden days.... lol.? BonnieB > > > > > > > > > > > > > > > > New Goals > > > > Hi y'all, > > > > > > > > Just an update on me Krumdawg (Greg). Yeaterday able to ride stationary bike for 10 minutes each three times, without losing balance and falling off. Happy happy Greg. Will start increase time on stationary Bike. Will rebuild my endurance and then Start a good ole Army PT Program to get rid of this Prednisone bloat. Yes, all I will take it easy and start slow. I know I am not the young trooper I use to be. OO and Rose I think I will save up for a Recumbent trike. Priced them out and they are twice as expensive as my Mountain bike. Plus need to get under 250 lbs. (and I am on my way) or the ones for heavy people are even more expensive. Will update y'all in a few weeks and let you know if I successfully increased my endurance and if I have started my PT Program. > > > > > > > > Thank you all for all the advice and prayers I recieved in the past few months. They have really made a difference in my like and I am very thank ful to all my new friends. > > > > > > > > May you all have as many aspossible Pain free and loving dyas. > > > > > > > > Greg aka Krumdawg > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2009 Report Share Posted June 14, 2009 At the time I was still working & the tremors were really interfering (nothing like trying to repair an episiotomy with shaky hands!). Apparently it decreases tremors in some people. It actually helped the tremors quite a bit, but really accelerated the weight gain. I was keeping a chart & with just the Pred, my gain was slow & steady, but after adding the Remeron, it just shot up. I guess I didn't read all the info on it, and nobody told me about the weight gain! I might have still used it, because the tremors were such a problem, but could have tried harder to watch the appetite/weight gain. The usual balance of risks and benefits. Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 "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: Neurosarcoidosis From: rozebudz36@...Date: Sun, 14 Jun 2009 05:36:11 -0700Subject: RE: Re: New Goals Rose, If you don't mind me asking, what were you on the Remeron for? My psych dr wants to put me on it, but I don't like the sound of the side effects... Thanks, Debbie Subject: RE: Re: New GoalsTo: neurosarcoidosis Date: Thursday, June 11, 2009, 11:10 AM Greg, I gained about 90# on the Pred, along with Remeron; went from 173 (I'm about 5'10") to 261. After about 3 years, I had dropped 60-65#. I've kind of plateaued at 195-200. What helped me finally drop some weight was the South Beach diet. I didn't buy the book; just got the basic info off the Internet. What it did for me was break my carb craving. It wasn't nearly as difficult as I expected. The first 2 weeks you cut out almost all carbs, then start adding some back. I don't remember the website I used, but it even provided a grocery list for Stage One. I just used that & bought the stuff I liked. A couple of times since then I've gone back to stage one for a week or two, just to get back on track. I think that if I really stayed on the plan, plus exercising as much as I can, that I could lose a few more pounds, especially in the mid-section. That's what I need to do, because that's the part that's hard on the heart. Yep, gonna dig out my papers & start that today! Thanks for the inspiration, dude! Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 "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: Neurosarcoidosis@ yahoogroups. com> From: krumdawg (AT) tx (DOT) rr.com> Date: Thu, 11 Jun 2009 14:34:27 +0000> Subject: Re: New Goals> > BonnieB, Yes I am Young (in Heart), But I do remember those bikes. Heck I even remember when therer was only Back n White TV in my house. I remember fondly when Pin Ball was the video games. It is the short term memory I have trouble with I don't remember yesterday except for glimsps. Heck I forgot th PIN I had for my money card yesterday (wrote a note about it to me self). I plan to take it slow. Learned my mistake the first time. A month in the hospital then a month at home and decided I would push myself to getting well. Well the granunomlas around my brain and brain stem srunk down and I thought I was cured. Well 3 months later the came back with a vengence. So I will take it slow and make sure of my processes. It is my desire to get to and maintain remission. I am Pre Diabetic due to that ------------ --------- --------- --------- --------- - Prednisone. So I need exercise and diet to control that also. I was always active and I thought I was healthy Prior to Neurosarcoidosis. Its been hard to realize how much this thing has changed my life. I took alot to face these changes and learn to work with and around them. I will never be that power lifting soldier I use to be. But I learned I can get close to it and it can help me control this and workouts (good hard and exhausting ones)make me feel better. I know getting back on the trails and road on abike will help me feel even more normal (though I know the spoon theory and I apply it to things I do). Well y'all sorry for going off such wild tangents in this response. I guess I need to remend myself where I am at right now.> > Blessings and good thoughts to all, > > Greg aka Krumdawg> > > > >> > > > yea Greg!!Good for you!!I? it's so hard to get back in the game after a sarc time out. We all know the struggle to keep going on when the pain make you want to quit. Just take it slow, slow and steady wins the race,as they say.. > > ? On another note, I saw old fashioned, beach bikes at Walmart. The kind with no hand brakes, chrome bumpers, nice size seat and one speed. Yes, they still make them. I think that would be my bike of choice, but I have one to start on. Doesn't that bring back memories?? Oh, I'm sorry, you may be a young'un, and not have a clue about the bikes of the olden days.... lol.? BonnieB> > > > > > > > > > > > > > > > New Goals> > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Hi y'all,> > > > > > > > Just an update on me Krumdawg (Greg). Yeaterday able to ride stationary bike for 10 minutes each three times, without losing balance and falling off. Happy happy Greg. Will start increase time on stationary Bike. Will rebuild my endurance and then Start a good ole Army PT Program to get rid of this Prednisone bloat. Yes, all I will take it easy and start slow. I know I am not the young trooper I use to be. OO and Rose I think I will save up for a Recumbent trike. Priced them out and they are twice as expensive as my Mountain bike. Plus need to get under 250 lbs. (and I am on my way) or the ones for heavy people are even more expensive. Will update y'all in a few weeks and let you know if I successfully increased my endurance and if I have started my PT Program. > > > > > > > > Thank you all for all the advice and prayers I recieved in the past few months. They have really made a difference in my like and I am very thank ful to all my new friends.> > > > > > > > May you all have as many aspossible Pain free and loving dyas.> > > > > > > > Greg aka Krumdawg> >> > > > > ------------ --------- --------- ------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> 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 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2009 Report Share Posted August 27, 2009 , Congratulations on the new goal! The band is something that I have seriously contemplated even before my lung disease. Unfortunately it's off the table for me as sedation and anesthesia for me are impossible unless it's an emergency and absolute necessity. (They won't even do a colonoscopy on me. LOL) You will be in my thoughts and prayers as you get ready to take this step. I had my first round of rehab 3 years ago and the last time I saw my pulmo back in June I requested a prescription. I start the pulmonary rehab at Duke September 9. I go Monday through Friday from 12:30-4:30 for a month. OMG It's going to kick my butt. I'm mostly just excited (maybe a little nervous...this is known as the 'boot camp' of pulmonary rehab lol) and I can't wait to get started. Good luck with rehab. You know I'm a huge advocate and I know you have found benefit in it also or you wouldn't be going for a second round. Enjoy it! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Wednesday, August 26, 2009 10:24:16 PMSubject: New Goals I've been reading alot about goals and dreams some of us had prior to diagnosis and figured I would share a few of my new goals and dreams after 31/2 years of a verified diagnosis. The past week has been full of milestones for my family. Friday my son became a teenager (13.) Monday he started his last year of middle school:( As many of you parents know the hard part of parenting has just began for Billy and me. We once wondered if we would get to see this day together. I look forward to what else is to come.Just yesterday I had my Pulmonary Rehab evaluation for my second round. My first round was 2 years ago. Believe it or not, I requested the rx for rehab this time. I start classes tomorrow and have another 8 weeks to follow. I had a goal in mind when I asked for the RX, and I am excited to be on this part of the journey. The ugly truth is I've struggled with my weight for as long as I can remember. Then in 2007 The pulmodude and I decided it was time to give Prednisone and Cellcept a shot. I got even sicker and even fatter. I've only been able to lose 20 of the many many pounds I gained, not to the pounds I already had . I've managed to keep it off for a year but, can't seem to lose any more. Back in March my primary doc suggested gastric banding surgery. I took my time to make a decision. More honestly, I blew the idea off until I was grocery shopping one day in June and found it more difficult thant ever to breath. That very night I went to the Gastric Surgeons seminar then came home and discussed it with ol' hubby. I'm in the process of jumping through hoops for insurance. Between my regular insurance and Medicare we will pay very little out of pocket. We've met deductibles for this year so it may even be less than $100. I started 6 months of dieting monitored by my primary and asked for the rehab rx. I wanted to make sure that my diaphram and chest muscles were prepared for the stress of being on a ventilator during surgery. Right now I'm not a candidate for transplant because of my weight. I understand the risks of surgery as well as the changes I will be making. I still haven't decided if I want a transplant. But, I have decided to lose this weight and open the door of possibility. I want to be the one that says "no." (Did I mention I'm a control freak?) My surgery should be late November. 34 FLIPF dx 1/06 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2009 Report Share Posted August 27, 2009 Hi ,The weight loss is so tough for all of us. We have so many obstacles in our way, medications that can cause weight gain, extreme fatigue, and the inability to breathe and fully exercise like we need too. I can understand your decision for the gastric bypass surgery. Like you, I want the option of a lung transplant and so I have to lose 35 lbs. We all make choices based on our hopes and dreams and I think the more choices we have the more empowered we feel over our disease. You are so YOUNG and have many milestones still to reach with your young children; my heart goes out to you. My children are 29, 23, and 20. My son (23), will start his senior year at Central Washington University and I plan to be at his graduation ceremony June 2010! It must be so tough for your young children to understand the seriousness of your disease too. My youngest daughter will be attending her 2nd year at the community college and I want to see her succeed, but she is struggling a little and has had a tougher time with my disease and has regressed some. It's an uphill battle but we have to climbing not knowing what's on the other side. Keep on hoping and dreaming it's what fuels the fire to fight. C_53_Familial IPF_5/09WashingtonTo: Breathe-Support Sent: Wednesday, August 26, 2009 7:24:16 PMSubject: New Goals I've been reading alot about goals and dreams some of us had prior to diagnosis and figured I would share a few of my new goals and dreams after 31/2 years of a verified diagnosis. The past week has been full of milestones for my family. Friday my son became a teenager (13.) Monday he started his last year of middle school:( As many of you parents know the hard part of parenting has just began for Billy and me. We once wondered if we would get to see this day together. I look forward to what else is to come. Just yesterday I had my Pulmonary Rehab evaluation for my second round. My first round was 2 years ago. Believe it or not, I requested the rx for rehab this time. I start classes tomorrow and have another 8 weeks to follow. I had a goal in mind when I asked for the RX, and I am excited to be on this part of the journey. The ugly truth is I've struggled with my weight for as long as I can remember. Then in 2007 The pulmodude and I decided it was time to give Prednisone and Cellcept a shot. I got even sicker and even fatter. I've only been able to lose 20 of the many many pounds I gained, not to the pounds I already had . I've managed to keep it off for a year but, can't seem to lose any more. Back in March my primary doc suggested gastric banding surgery. I took my time to make a decision. More honestly, I blew the idea off until I was grocery shopping one day in June and found it more difficult thant ever to breath. That very night I went to the Gastric Surgeons seminar then came home and discussed it with ol' hubby. I'm in the process of jumping through hoops for insurance. Between my regular insurance and Medicare we will pay very little out of pocket. We've met deductibles for this year so it may even be less than $100. I started 6 months of dieting monitored by my primary and asked for the rehab rx. I wanted to make sure that my diaphram and chest muscles were prepared for the stress of being on a ventilator during surgery. Right now I'm not a candidate for transplant because of my weight. I understand the risks of surgery as well as the changes I will be making. I still haven't decided if I want a transplant. But, I have decided to lose this weight and open the door of possibility. I want to be the one that says "no." (Did I mention I'm a control freak?) My surgery should be late November. 34 FL IPF dx 1/06 start: 0000-00-00 end: 0000-00-00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2009 Report Share Posted August 27, 2009 well said lisa, thanks Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: New GoalsTo: Breathe-Support Date: Thursday, August 27, 2009, 9:09 AM Hi ,The weight loss is so tough for all of us. We have so many obstacles in our way, medications that can cause weight gain, extreme fatigue, and the inability to breathe and fully exercise like we need too. I can understand your decision for the gastric bypass surgery. Like you, I want the option of a lung transplant and so I have to lose 35 lbs. We all make choices based on our hopes and dreams and I think the more choices we have the more empowered we feel over our disease. You are so YOUNG and have many milestones still to reach with your young children; my heart goes out to you. My children are 29, 23, and 20. My son (23), will start his senior year at Central Washington University and I plan to be at his graduation ceremony June 2010! It must be so tough for your young children to understand the seriousness of your disease too. My youngest daughter will be attending her 2nd year at the community college and I want to see her succeed, but she is struggling a little and has had a tougher time with my disease and has regressed some. It's an uphill battle but we have to climbing not knowing what's on the other side. Keep on hoping and dreaming it's what fuels the fire to fight. C_53_Familial IPF_5/09Washington From: hunnybunnybinky <brandy (AT) burnspc (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Wednesday, August 26, 2009 7:24:16 PMSubject: New Goals I've been reading alot about goals and dreams some of us had prior to diagnosis and figured I would share a few of my new goals and dreams after 31/2 years of a verified diagnosis. The past week has been full of milestones for my family. Friday my son became a teenager (13.) Monday he started his last year of middle school:( As many of you parents know the hard part of parenting has just began for Billy and me. We once wondered if we would get to see this day together. I look forward to what else is to come.Just yesterday I had my Pulmonary Rehab evaluation for my second round. My first round was 2 years ago. Believe it or not, I requested the rx for rehab this time. I start classes tomorrow and have another 8 weeks to follow. I had a goal in mind when I asked for the RX, and I am excited to be on this part of the journey. The ugly truth is I've struggled with my weight for as long as I can remember. Then in 2007 The pulmodude and I decided it was time to give Prednisone and Cellcept a shot. I got even sicker and even fatter. I've only been able to lose 20 of the many many pounds I gained, not to the pounds I already had . I've managed to keep it off for a year but, can't seem to lose any more. Back in March my primary doc suggested gastric banding surgery. I took my time to make a decision. More honestly, I blew the idea off until I was grocery shopping one day in June and found it more difficult thant ever to breath. That very night I went to the Gastric Surgeons seminar then came home and discussed it with ol' hubby. I'm in the process of jumping through hoops for insurance. Between my regular insurance and Medicare we will pay very little out of pocket. We've met deductibles for this year so it may even be less than $100. I started 6 months of dieting monitored by my primary and asked for the rehab rx. I wanted to make sure that my diaphram and chest muscles were prepared for the stress of being on a ventilator during surgery. Right now I'm not a candidate for transplant because of my weight. I understand the risks of surgery as well as the changes I will be making. I still haven't decided if I want a transplant. But, I have decided to lose this weight and open the door of possibility. I want to be the one that says "no." (Did I mention I'm a control freak?) My surgery should be late November. 34 FLIPF dx 1/06start: 0000-00-00 end: 0000-00-00 start: 0000-00-00 end: 0000-00-00 Quote Link to comment Share on other sites More sharing options...
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