RE: encouragement

August 23, 2010

I would love to know the answer to this. I'm in my third week and can eat less foods than the five I'm on. I tried Kombucha squash and then had blood and mucus. Now all protein makes me feel sick. Hello. My son was diagnosed with Chrohn's 2 yearws ago and have been on the immuno-suppresaant etc. I highly dislike them and as his condition did nto seem to improve they recommended remicade. That scared me quite a bit. That was when we discovered SCD. i did all teh research a bouitght several cook books and started following teh vari0ous stages. he hated it as a 9 year old but adapted as I chose to follow it with him. 2 months in we got really gung how and started almond flour and several other leagal items and it all went down hill as he started ot have floar eups again and after a fall that put him in teh hospital we restarted back at the intro diet.The next 3 months were wonderful as he gained weight was in the bathroom only once a day. All seemed fine. we went on vacattion and was very careful to insure all teh food form restaurants were legal and tried ot be very careful. But i am sure some illegals made it in here and there.Still he continued to do well and we decided to move to stage 2 (after 3 months) with almond butter and even almond flour baked goods. Things seemed to go downhill almost immediately. We stopped the new foods and went back to only bare green beans and bland meat with SCD BBQ sauce and his standard SCD smoothie, fruits etc. But the flare up has remained for 3 weeks and with school starting we are at a low point to continue with the diet as it just seems to be torture for him with the bathroom runs returning.My question: is this common to have flares when we have been so strict and have others run into the same experience. I want to keep at it but I expect his gastologist (who turned us on to the diet) will be back to pushing remicade again...Thoughts, encouragement, advice?Thanks!

August 23, 2010

Hi there!

Well, there are 2 possibilities from what I can see...

1. Introducing nut flours too soon. Nut butters are easier to digest and you can

sub them for nut flours when baking. If you have removed both from his diet, you

should start with just the butter for a while.

2. It seems like all of this happened around 3 months? This is what is typically

known as a " 3 month regression " ... it's when those nasty bacteria that have

survived starvation decide to act up and hang on for their dear lives. It's

important to stay strict on the diet throughout the flare and they will

eventually die-off again. These regressions are common throughout the first

year- I forget the exact months, but it's something like at 3,7,9 and 12 months.

I pretty much had them all and the one at 3 months was the worst- it lasted 5

weeks!

As Marilyn would say, be sure to keep a journal so you can monitor these

symptoms.

-Joanna

SCD 9/2009, Crohn's 1992, 20mg Prednisone

>> Thoughts, encouragement, advice?

>

> Thanks!

August 24, 2010

This is exactly how I reacted to nuts/nut flour anything for a very long time on

the diet. Even today if I eat too much, I have symptoms. I do tolerate coconut

flour stuff a lot better though. That might be an option for you. I'm sure he

misses baked goods but for the first 2 years, I hardly ate them. Now it's only

an every now and then thing.

Misty Kimble

CD - no meds

SCD - Jan 2008

> My question: is this common to have flares when we have been so strict and

have others run into the same experience. I want to keep at it but I expect his

gastologist (who turned us on to the diet) will be back to pushing remicade

again...

>

> Thoughts, encouragement, advice?

>

> Thanks!

>

October 15, 2010

, I hope you have a blast this weekend! Theresa & I are taking the kids to a picnic tomorrow; it's sponsored by the Fun Run folks. Sunday after church I'm hoping Brad & his girlfriend will go see "Secretariart" with me.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: rkelty99@...Date: Fri, 15 Oct 2010 15:16:11 -0700Subject: encouragement

I just wanted to let some of you who are having a hard time of it how much I have improved in the last couple of years after 12 years of a terrible time. I started with one of those black out moments, although I wasn't on any meds at the time. I was driving on the interstate and blacked out, bumping into the car in front of me. It wasn't nearly as serious as it could have been, and I, too was told I was "flat" after the accident. I couldn't even remember the name of my insurance company.From there I went downhill fast. I have had a myriad of neurosymptoms, and at one time I couldn't even get out of bed. I spent years in a scooter or using a quad cane. I had limited use of my hands and my feet just flopped.I did have good spots over those first twelve years -- when I was on a high level of steroids, and when that failed to do the trick, when I was on cytoxan. Veterans here probably remember what a mess I got in when on chemo. I got a staph infection in my right elbow which turned into sepsis. I had to have reconstructive surgery on my left arm (skin graft and the like) and my brain was mush because I had enceptolopathy(sp) (infection of the brain?). When I finally got out of bed after that stint, I was put on Remicade and then methotraxate. Then my liver went and I had to go on Imuran. Thank G-d. My ACE level has been stable for two years and the only physical disability is in the first place that went wrong-- my left foot. It still drags when I walk too long or when I am tired.I still have incredibly bad neuralgia just about everywhere and I suffer from the same fatigue I think we all battle. Still, I can walk around two blocks and I am able to go camping and vacation when I feel like it, and I am extremely grateful for that.In fact, if all goes well, I am planning an overnight tomorrow in a state forest about and hour and a half from here. Wish me luck!Just thought I'

To: Neurosarcoidosis Sent: Fri, October 15, 2010 3:51:59 PMSubject: Re: Moon Face

Yes, I had terrible moon face and was up to 240 at one time but I lost 70 pounds and I still have a double chin (as you can see from my photos with Rose), but it is much better than it used to be.

To: Neurosarcoidosis Sent: Thu, October 14, 2010 4:01:10 PMSubject: Moon Face

Hi,Anyone else get moon face? How did you deal with it, did people notice right away? Where you able to get rid of it?KP

October 17, 2010

Thank you for sharing this, it gives us hope to know that things can turn around and get better, that's awesome. Many of us have been there and wonder will it always be like this, and for most the answer is no. We can all still Hope for better times.

MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)

I just wanted to let some of you who are having a hard time of it how much I have improved in the last couple of years after 12 years of a terrible time. I started with one of those black out moments, although I wasn't on any meds at the time. I was driving on the interstate and blacked out, bumping into the car in front of me. It wasn't nearly as serious as it could have been, and I, too was told I was " flat " after the accident. I couldn't even remember the name of my insurance company.

From there I went downhill fast. I have had a myriad of neurosymptoms, and at one time I couldn't even get out of bed. I spent years in a scooter or using a quad cane. I had limited use of my hands and my feet just flopped.

I did have good spots over those first

twelve years -- when I was on a high level of steroids, and when that failed to do the trick, when I was on cytoxan. Veterans here probably remember what a mess I got in when on chemo. I got a staph infection in my right elbow which turned into sepsis. I had to have reconstructive surgery on my left arm (skin graft and the like) and my brain was mush because I had enceptolopathy(sp) (infection of the brain?).

When I finally got out of bed after that stint, I was put on Remicade and then methotraxate. Then my liver went and I had to go on Imuran. Thank G-d. My ACE level has been stable for two years and the only physical disability is in the first place that went wrong-- my left foot. It still drags when I walk too long or when I am tired.

I still have incredibly bad neuralgia just about everywhere and I suffer from the same fatigue I think we all battle. Still, I can walk around two

blocks and I am able to go camping and vacation when I feel like it, and I am extremely grateful for that.In fact, if all goes well, I am planning an overnight tomorrow in a state forest about and hour and a half from here. Wish me luck!

Just thought I'

To: Neurosarcoidosis

Sent: Fri, October 15, 2010 3:51:59 PMSubject: Re: Moon Face

Yes, I had terrible moon face and was up to 240 at one time but I lost 70 pounds and I still have a double chin (as you can see from my photos with Rose), but it is much better than it used to be.

To: Neurosarcoidosis

Sent: Thu, October 14, 2010 4:01:10 PMSubject:

Moon Face

Hi,

Anyone else get moon face? How did you deal with it, did people notice right away? Where you able to get rid of it?

KP

October 17, 2010

I first met in person after she'd had the reconstructive surgery on her arm, although I remember her talking about her ordeal on the list. When I met her, the prognosis from her treating doctors was grim. I thought she was a dying woman. But over the past 7 years (Can you believe it's been 7 years, ?) I've seen her improve, slowly at times & other times I would see a pretty quick change. She truly is a walking miracle! And I'm adding this just for you, . (Hope I got it right!) Some of you old-timers might remember it.

Oy, Oy, weller, weller, aye!!

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: mebramer@...Date: Sun, 17 Oct 2010 16:29:57 -0600Subject: Re: encouragement

Thank you for sharing this, it gives us hope to know that things can turn around and get better, that's awesome. Many of us have been there and wonder will it always be like this, and for most the answer is no. We can all still Hope for better times. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)

I just wanted to let some of you who are having a hard time of it how much I have improved in the last couple of years after 12 years of a terrible time. I started with one of those black out moments, although I wasn't on any meds at the time. I was driving on the interstate and blacked out, bumping into the car in front of me. It wasn't nearly as serious as it could have been, and I, too was told I was "flat" after the accident. I couldn't even remember the name of my insurance company.From there I went downhill fast. I have had a myriad of neurosymptoms, and at one time I couldn't even get out of bed. I spent years in a scooter or using a quad cane. I had limited use of my hands and my feet just flopped.I did have good spots over those first twelve years -- when I was on a high level of steroids, and when that failed to do the trick, when I was on cytoxan. Veterans here probably remember what a mess I got in when on chemo. I got a staph infection in my right elbow which turned into sepsis. I had to have reconstructive surgery on my left arm (skin graft and the like) and my brain was mush because I had enceptolopathy(sp) (infection of the brain?). When I finally got out of bed after that stint, I was put on Remicade and then methotraxate. Then my liver went and I had to go on Imuran. Thank G-d. My ACE level has been stable for two years and the only physical disability is in the first place that went wrong-- my left foot. It still drags when I walk too long or when I am tired.I still have incredibly bad neuralgia just about everywhere and I suffer from the same fatigue I think we all battle. Still, I can walk around two blocks and I am able to go camping and vacation when I feel like it, and I am extremely grateful for that.In fact, if all goes well, I am planning an overnight tomorrow in a state forest about and hour and a half from here. Wish me luck!Just thought I'

To: Neurosarcoidosis Sent: Fri, October 15, 2010 3:51:59 PMSubject: Re: Moon Face

Yes, I had terrible moon face and was up to 240 at one time but I lost 70 pounds and I still have a double chin (as you can see from my photos with Rose), but it is much better than it used to be.

To: Neurosarcoidosis Sent: Thu, October 14, 2010 4:01:10 PMSubject: Moon Face Hi,Anyone else get moon face? How did you deal with it, did people notice right away? Where you able to get rid of it?KP

October 18, 2010

I remember it, and how sick was, how close she was to not making, and now it's great to hear and see how well she's doing, Awesome! MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too

is just today:)

I first met in person after she'd had the reconstructive surgery on her arm, although I remember her talking about her ordeal on the list. When I met her, the prognosis from her treating doctors was grim. I thought she was a dying woman. But over the past 7 years (Can you believe it's been 7 years, ?) I've seen her improve, slowly at times & other times I would see a pretty quick change. She truly is a walking miracle!

And I'm adding this just for you, . (Hope I got it right!) Some of you old-timers might remember it.

Oy, Oy, weller, weller, aye!!

Ramblin' RoseModerator

A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: mebramer@...Date: Sun, 17 Oct 2010 16:29:57 -0600

Subject: Re: encouragement

Thank you for sharing this, it gives us hope to know that things can turn around and get better, that's awesome. Many of us have been there and wonder will it always be like this, and for most the answer is no. We can all still Hope for better times.

MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)

I just wanted to let some of you who are having a hard time of it how much I have improved in the last couple of years after 12 years of a terrible time. I started with one of those black out moments, although I wasn't on any meds at the time. I was driving on the interstate and blacked out, bumping into the car in front of me. It wasn't nearly as serious as it could have been, and I, too was told I was " flat " after the accident. I couldn't even remember the name of my insurance company.

From there I went downhill fast. I have had a myriad of neurosymptoms, and at one time I couldn't even get out of bed. I spent years in a scooter or using a quad cane. I had limited use of my hands and my feet just flopped.

I did have good spots over those first twelve years -- when I was on a high level of steroids, and when that failed to do the trick, when I was on cytoxan. Veterans here probably remember what a mess I got in when on chemo. I got a staph infection in my right elbow which turned into sepsis. I had to have reconstructive surgery on my left arm (skin graft and the like) and my brain was mush because I had enceptolopathy(sp) (infection of the brain?).

When I finally got out of bed after that stint, I was put on Remicade and then methotraxate. Then my liver went and I had to go on Imuran. Thank G-d. My ACE level has been stable for two years and the only physical disability is in the first place that went wrong-- my left foot. It still drags when I walk too long or when I am tired.

I still have incredibly bad neuralgia just about everywhere and I suffer from the same fatigue I think we all battle. Still, I can walk around two blocks and I am able to go camping and vacation when I feel like it, and I am extremely grateful for that.

In fact, if all goes well, I am planning an overnight tomorrow in a state forest about and hour and a half from here. Wish me luck!Just thought I'

To: Neurosarcoidosis

Sent: Fri, October 15, 2010 3:51:59 PMSubject: Re: Moon Face

Yes, I had terrible moon face and was up to 240 at one time but I lost 70 pounds and I still have a double chin (as you can see from my photos with Rose), but it is much better than it used to be.

To: Neurosarcoidosis

Sent: Thu, October 14, 2010 4:01:10 PMSubject: Moon Face Hi,Anyone else get moon face? How did you deal with it, did people notice right away? Where you able to get rid of it?KP

October 20, 2010

ha ha. I'd forgotten about that sign off. That and the bootstrap fairy. Maybe I should resurrect her?To: neurosarcoidosis Sent: Sun, October 17, 2010 7:01:50 PMSubject: RE: encouragement

I first met in person after she'd had the reconstructive surgery on her arm, although I remember her talking about her ordeal on the list. When I met her, the prognosis from her treating doctors was grim. I thought she was a dying woman. But over the past 7 years (Can you believe it's been 7 years, ?) I've seen her improve, slowly at times & other times I would see a pretty quick change. She truly is a walking miracle! And I'm adding this just for you, . (Hope I got it right!) Some of you old-timers might remember it.

Oy, Oy, weller, weller, aye!!

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: mebramer@...Date: Sun, 17 Oct 2010 16:29:57 -0600Subject: Re: encouragement

Thank you for sharing this, it gives us hope to know that things can turn around and get better, that's awesome. Many of us have been there and wonder will it always be like this, and for most the answer is no. We can all still Hope for better times. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)

I just wanted to let some of you who are having a hard time of it how much I have improved in the last couple of years after 12 years of a terrible time. I started with one of those black out moments, although I wasn't on any meds at the time. I was driving on the interstate and blacked out, bumping into the car in front of me. It wasn't nearly as serious as it could have been, and I, too was told I was "flat" after the accident. I couldn't even remember the name of my insurance company.From there I went downhill fast. I have had a myriad of neurosymptoms, and at one time I couldn't even get out of bed. I spent years in a scooter or using a quad cane. I had limited use of my hands and my feet just flopped.I did have good spots over those first twelve years -- when I was on a high level of steroids, and when that failed to do the trick, when I was on cytoxan. Veterans here probably

remember what a mess I got in when on chemo. I got a staph infection in my right elbow which turned into sepsis. I had to have reconstructive surgery on my left arm (skin graft and the like) and my brain was mush because I had enceptolopathy(sp) (infection of the brain?). When I finally got out of bed after that stint, I was put on Remicade and then methotraxate. Then my liver went and I had to go on Imuran. Thank G-d. My ACE level has been stable for two years and the only physical disability is in the first place that went wrong-- my left foot. It still drags when I walk too long or when I am tired.I still have incredibly bad neuralgia just about everywhere and I suffer from the same fatigue I think we all battle. Still, I can walk around two blocks and I am able to go camping and vacation when I feel like it, and I am extremely grateful for that.In fact, if all goes well, I am

planning an overnight tomorrow in a state forest about and hour and a half from here. Wish me luck!Just thought I'

To: Neurosarcoidosis Sent: Fri, October 15, 2010 3:51:59 PMSubject: Re: Moon Face

Yes, I had terrible moon face and was up to 240 at one time but I lost 70 pounds and I still have a double chin (as you can see from my photos with Rose), but it is much better than it used to be.

To: Neurosarcoidosis Sent: Thu, October 14, 2010 4:01:10 PMSubject: Moon Face Hi,Anyone else get moon face? How did you deal with it, did people notice right away? Where you able to get rid of it?KP

October 20, 2010

Thanks, Marla. I was going through some old boxes of files and ran across the copies of the doctor's reports from my admission and the hospital stay. It was certainly no picnic, and I don't know how I made it through except for the great support from my family and this group. Thanks everyone who was around back then. I remember using my laptop in the rehab facility, and I remember the visit from Rose (what a way to meet someone -- I was flat on my back in a rented hospital bed at home, using a bedside commode and not making any sense talking because of the infection in the brain.)Anyway, it's a great reminder to be extra careful when on any immuno-suppressant (sp?). I had just had a cytoxan treatment the night before, and I noticed a small cut on my arm that had a red patch

around it. I was very, very stupid not going into the emergency room, but I felt it was something I could fix with some neosporin. I don't know how I got that cut, but ignoring it was a huge mistake. By morning my entire arm was red and puffy and hurt like hell. The ensuing infection ate up a good chunk of tissue in my arm. I have a lovely patch on my elbow that came from my thigh and a great long scar. I'm just very, very grateful they didn't amputate my arm. Unfortunately, the infection also traveled from my arm to my blood system and I had a lovely case of sepsis that almost killed me.Just a word to the wise -- if your instincts tell you to go to the emergency room, don't try to talk yourself out of it. You never know when something that seems like a small thing will blow up in your face (I know that happens to stroke vicims all the time too.)Sorry if this is scary. I think sometime we forget how powerful

the drugs are that they have us on. And don't shy away from cytoxan if they can get you on it. It really, really saved my life for awhile.Love you all,NeeTo: Neurosarcoidosis Sent: Mon, October 18, 2010 10:58:54 PMSubject: Re: encouragement

I remember it, and how sick was, how close she was to not making, and now it's great to hear and see how well she's doing, Awesome! MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too

is just today:)

I first met in person after she'd had the reconstructive surgery on her arm, although I remember her talking about her ordeal on the list. When I met her, the prognosis from her treating doctors was grim. I thought she was a dying woman. But over the past 7 years (Can you believe it's been 7 years, ?) I've seen her improve, slowly at times & other times I would see a pretty quick change. She truly is a walking miracle!

And I'm adding this just for you, . (Hope I got it right!) Some of you old-timers might remember it.

Oy, Oy, weller, weller, aye!!

Ramblin' RoseModerator

A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: mebramer@...Date: Sun, 17 Oct 2010 16:29:57 -0600

Subject: Re: encouragement

Thank you for sharing this, it gives us hope to know that things can turn around and get better, that's awesome. Many of us have been there and wonder will it always be like this, and for most the answer is no. We can all still Hope for better times.

MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)

I just wanted to let some of you who are having a hard time of it how much I have improved in the last couple of years after 12 years of a terrible time. I started with one of those black out moments, although I wasn't on any meds at the time. I was driving on the interstate and blacked out, bumping into the car in front of me. It wasn't nearly as serious as it could have been, and I, too was told I was "flat" after the accident. I couldn't even remember the name of my insurance company.

From there I went downhill fast. I have had a myriad of neurosymptoms, and at one time I couldn't even get out of bed. I spent years in a scooter or using a quad cane. I had limited use of my hands and my feet just flopped.

I did have good spots over those first twelve years -- when I was on a high level of steroids, and when that failed to do the trick, when I was on cytoxan. Veterans here probably remember what a mess I got in when on chemo. I got a staph infection in my right elbow which turned into sepsis. I had to have reconstructive surgery on my left arm (skin graft and the like) and my brain was mush because I had enceptolopathy(sp) (infection of the brain?).

When I finally got out of bed after that stint, I was put on Remicade and then methotraxate. Then my liver went and I had to go on Imuran. Thank G-d. My ACE level has been stable for two years and the only physical disability is in the first place that went wrong-- my left foot. It still drags when I walk too long or when I am tired.

I still have incredibly bad neuralgia just about everywhere and I suffer from the same fatigue I think we all battle. Still, I can walk around two blocks and I am able to go camping and vacation when I feel like it, and I am extremely grateful for that.

In fact, if all goes well, I am planning an overnight tomorrow in a state forest about and hour and a half from here. Wish me luck!Just thought I'

To: Neurosarcoidosis

Sent: Fri, October 15, 2010 3:51:59 PMSubject: Re: Moon Face

Yes, I had terrible moon face and was up to 240 at one time but I lost 70 pounds and I still have a double chin (as you can see from my photos with Rose), but it is much better than it used to be.

To: Neurosarcoidosis

Sent: Thu, October 14, 2010 4:01:10 PMSubject: Moon Face Hi,Anyone else get moon face? How did you deal with it, did people notice right away? Where you able to get rid of it?KP

October 20, 2010

OMG I can't remember how many times I heard that: bootstrap fairy, but it always reminded me to pull em and keep on going............ maybe you should resurrect her, I would leave that honor to you.

Rose, Really you did so much for so many of us when we needed a kind word, or a kick in the butt, you were there to give it, and the hugs too. It's so nice having you back. I miss Tracie now, and still wonder about Kim.

Darlene and , you are angels too, MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)

ha ha. I'd forgotten about that sign off. That and the bootstrap fairy. Maybe I should resurrect her?

To: neurosarcoidosis Sent: Sun, October 17, 2010 7:01:50 PM

Subject: RE: encouragement

I first met in person after she'd had the reconstructive surgery on her arm, although I remember her talking about her ordeal on the list. When I met her, the prognosis from her treating doctors was grim. I thought she was a dying woman. But over the past 7 years (Can you believe it's been 7 years, ?) I've seen her improve, slowly at times & other times I would see a pretty quick change. She truly is a walking miracle!

And I'm adding this just for you, . (Hope I got it right!) Some of you old-timers might remember it.

Oy, Oy, weller, weller, aye!!

Ramblin' RoseModerator

A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: mebramer@...Date: Sun, 17 Oct 2010 16:29:57 -0600

Subject: Re: encouragement

Thank you for sharing this, it gives us hope to know that things can turn around and get better, that's awesome. Many of us have been there and wonder will it always be like this, and for most the answer is no. We can all still Hope for better times.

MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)

I just wanted to let some of you who are having a hard time of it how much I have improved in the last couple of years after 12 years of a terrible time. I started with one of those black out moments, although I wasn't on any meds at the time. I was driving on the interstate and blacked out, bumping into the car in front of me. It wasn't nearly as serious as it could have been, and I, too was told I was " flat " after the accident. I couldn't even remember the name of my insurance company.

From there I went downhill fast. I have had a myriad of neurosymptoms, and at one time I couldn't even get out of bed. I spent years in a scooter or using a quad cane. I had limited use of my hands and my feet just flopped.

I did have good spots over those first twelve years -- when I was on a high level of steroids, and when that failed to do the trick, when I was on cytoxan. Veterans here probably

remember what a mess I got in when on chemo. I got a staph infection in my right elbow which turned into sepsis. I had to have reconstructive surgery on my left arm (skin graft and the like) and my brain was mush because I had enceptolopathy(sp) (infection of the brain?).

When I finally got out of bed after that stint, I was put on Remicade and then methotraxate. Then my liver went and I had to go on Imuran. Thank G-d. My ACE level has been stable for two years and the only physical disability is in the first place that went wrong-- my left foot. It still drags when I walk too long or when I am tired.

I still have incredibly bad neuralgia just about everywhere and I suffer from the same fatigue I think we all battle. Still, I can walk around two blocks and I am able to go camping and vacation when I feel like it, and I am extremely grateful for that.

In fact, if all goes well, I am

planning an overnight tomorrow in a state forest about and hour and a half from here. Wish me luck!Just thought I'

To: Neurosarcoidosis

Sent: Fri, October 15, 2010 3:51:59 PMSubject: Re: Moon Face

Yes, I had terrible moon face and was up to 240 at one time but I lost 70 pounds and I still have a double chin (as you can see from my photos with Rose), but it is much better than it used to be.

To: Neurosarcoidosis

Sent: Thu, October 14, 2010 4:01:10 PMSubject: Moon Face Hi,Anyone else get moon face? How did you deal with it, did people notice right away? Where you able to get rid of it?KP

October 20, 2010

Soooo Nice to have you back Nee:)MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)

Thanks, Marla. I was going through some old boxes of files and ran across the copies of the doctor's reports from my admission and the hospital stay. It was certainly no picnic, and I don't know how I made it through except for the great support from my family and this group. Thanks everyone who was around back then. I remember using my laptop in the rehab facility, and I remember the visit from Rose (what a way to meet someone -- I was flat on my back in a rented hospital bed at home, using a bedside commode and not making any sense talking because of the infection in the brain.)

Anyway, it's a great reminder to be extra careful when on any immuno-suppressant (sp?). I had just had a cytoxan treatment the night before, and I noticed a small cut on my arm that had a red patch

around it. I was very, very stupid not going into the emergency room, but I felt it was something I could fix with some neosporin. I don't know how I got that cut, but ignoring it was a huge mistake. By morning my entire arm was red and puffy and hurt like hell. The ensuing infection ate up a good chunk of tissue in my arm. I have a lovely patch on my elbow that came from my thigh and a great long scar. I'm just very, very grateful they didn't amputate my arm. Unfortunately, the infection also traveled from my arm to my blood system and I had a lovely case of sepsis that almost killed me.

Just a word to the wise -- if your instincts tell you to go to the emergency room, don't try to talk yourself out of it. You never know when something that seems like a small thing will blow up in your face (I know that happens to stroke vicims all the time too.)

Sorry if this is scary. I think sometime we forget how powerful

the drugs are that they have us on. And don't shy away from cytoxan if they can get you on it. It really, really saved my life for awhile.Love you all,Nee

To: Neurosarcoidosis Sent: Mon, October 18, 2010 10:58:54 PM

Subject: Re: encouragement

I remember it, and how sick was, how close she was to not making, and now it's great to hear and see how well she's doing, Awesome! Marla

Just one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too

is just today:)

I first met in person after she'd had the reconstructive surgery on her arm, although I remember her talking about her ordeal on the list. When I met her, the prognosis from her treating doctors was grim. I thought she was a dying woman. But over the past 7 years (Can you believe it's been 7 years, ?) I've seen her improve, slowly at times & other times I would see a pretty quick change. She truly is a walking miracle!

And I'm adding this just for you, . (Hope I got it right!) Some of you old-timers might remember it.

Oy, Oy, weller, weller, aye!!

Ramblin' RoseModerator

A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: mebramer@...

Date: Sun, 17 Oct 2010 16:29:57 -0600