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no, I am in the central valley but my docs are at s/clara... why?LLLORY@... wrote: Hmm, bee are you in southern calif?Laurie__________________________________________________

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the ppo comment, and sounds like you have different

coverage than most I have heard from here. Someone

told me that kaiser absolutely positively does not do

arms or legs. Just trying to figure it all out!

Thanks!

Laurie

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ok... Kaiser has not "announced" it but they have become basically a PPO not much of an HMO anymore... as an HR background I know the diff....I went from paying my tiny co-pay for hospital time to minimum of 200/day...gets EXPENSIVE,..,.. I ask to go home after recover lol...LLLORY@... wrote: the ppo comment, and sounds like you have differentcoverage than most I have heard from here. Someonetold me that kaiser absolutely positively does not doarms or legs. Just trying to figure it all out!Thanks!Laurie__________________________________________________

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Bee - how much weight did you loss and when did you have your WLS?

PEGGY

> bee? what is an upper surgery? Are you having the

> hernia and tt at no cost?

> Thanks,

> Laurie

>

>

> __________________________________________________

>

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  • 1 year later...

Tracie, I hope you truly enjoy your anniversary weekend. The whale watching would especially be wonderful. I'm sorry to hear about Rose and I suppose we all, at one time or another, will have to do the same for our parents. My prayers go out towards her. I hope she tries to pace herself during this stressful time. I also pray that your doctors will get an eye-opening from you on your next visit with them. As for me, I had to get new glasses AGAIN. Every two years, since my last big flare eight years ago, brings worsening eyesight and new glasses. It might be more often but insurance only pays for every other year. My mammogram was normal(sigh...:)). I have lost 17 lbs. so far on Nutri -System...despite Thanksgiving at my moms; my youngest son's (turkey and all the fixins)

birthday dinner(23 on the 10th) with him, his wife, her parents, me, my husband and oldest son at our place; Christmas at my hubby's parents; Christmas at my moms and a birthday dinner for my husband(52 on the 27th) once again at our place. I didn't make any Christmas sweets of any kind, like fudge, this year and that has helped a lot. Giving up the sweets and eating a LARGE salad every day has upped my energy a lot, too. I did have one severe hand pain attack last Saturday and went on some narcotic pain pills for a few days. The cold weather is early and more severe than usual this year in Wisconsin. We had another 8 inches of snow today. On the news it said that for the month of December we are up about 1 foot of snow more than usual for this time of year. I dragged(drug???)...out my hot wax machine to put my hands in on a regular basis to see if it will stem off the pain. Can you take too much MSM? I am up to

8 capsules a day. I hope everyone else is hanging in there and keeping warm and relaxed. sorry for the long post....hugs S.tiodaat@... wrote: Ok gang, we love to have everyone check in. For all of you that don't take advantage of posting-- our "lurkers" out there-- come in and introduce yourself. We share a common journey, and the info shared is so vital to our well-being. New voices are always

welcome. Our dear Rose is going to take some time away, and has temporarily gone on "no mail." Her mother has Alzhemiers, and she has been trying to take care of Mom, along with her own health issues, and pick up the pieces for her grandkids and nieces and nephews. All that, along with the group- is just putting her into overwhelm right now. So-- please keep her in your hearts and prayers. She'll be back when she has some housing issues taken care of with her mom. For the next week, I'll be watching the list-- along with Darlene and and Debbie-- so you will hear from us if you need help. It may take a bit longer than usual-- but someone will check in daily, or several times throughout the day. As for me, I will be here until Jan

8 and then I'm spending a long weekend on the coast with my hubby. The 10th is our 32nd wedding anniversary. I hope it storms, and we can stay in our room and watch the ocean rage. I hope it clears up and we can see the migration of the whales and their calves as they hang out along the coast of Northern California. Truly, the coast is so magical this time of year- you don't get the summer fog-- so often times you can see clear out to the horizon. When I get back, I'm going to start putting my energy into helping my docs understand the signifigance of a Right Bundle Branch Block-- that is starting to interfer with my health. I know it's the sarc-- and what happens is that the right side of my heart is getting a late signal to beat-- and so it having to work very hard. It's beating at the same time as the left-- so the blood isn't oxygenating

like it should. I will be back online as usual, and the gang and I will be here for each and everyone. Love to us all, Tracie NS Co-owner/moderatorSee AOL's top rated recipes and easy ways to stay

in shape for winter.

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

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Tracie, I hope you truly enjoy your anniversary weekend. The whale watching would especially be wonderful. I'm sorry to hear about Rose and I suppose we all, at one time or another, will have to do the same for our parents. My prayers go out towards her. I hope she tries to pace herself during this stressful time. I also pray that your doctors will get an eye-opening from you on your next visit with them. As for me, I had to get new glasses AGAIN. Every two years, since my last big flare eight years ago, brings worsening eyesight and new glasses. It might be more often but insurance only pays for every other year. My mammogram was normal(sigh...:)). I have lost 17 lbs. so far on Nutri -System...despite Thanksgiving at my moms; my youngest son's (turkey and all the fixins)

birthday dinner(23 on the 10th) with him, his wife, her parents, me, my husband and oldest son at our place; Christmas at my hubby's parents; Christmas at my moms and a birthday dinner for my husband(52 on the 27th) once again at our place. I didn't make any Christmas sweets of any kind, like fudge, this year and that has helped a lot. Giving up the sweets and eating a LARGE salad every day has upped my energy a lot, too. I did have one severe hand pain attack last Saturday and went on some narcotic pain pills for a few days. The cold weather is early and more severe than usual this year in Wisconsin. We had another 8 inches of snow today. On the news it said that for the month of December we are up about 1 foot of snow more than usual for this time of year. I dragged(drug???)...out my hot wax machine to put my hands in on a regular basis to see if it will stem off the pain. Can you take too much MSM? I am up to

8 capsules a day. I hope everyone else is hanging in there and keeping warm and relaxed. sorry for the long post....hugs S.tiodaat@... wrote: Ok gang, we love to have everyone check in. For all of you that don't take advantage of posting-- our "lurkers" out there-- come in and introduce yourself. We share a common journey, and the info shared is so vital to our well-being. New voices are always

welcome. Our dear Rose is going to take some time away, and has temporarily gone on "no mail." Her mother has Alzhemiers, and she has been trying to take care of Mom, along with her own health issues, and pick up the pieces for her grandkids and nieces and nephews. All that, along with the group- is just putting her into overwhelm right now. So-- please keep her in your hearts and prayers. She'll be back when she has some housing issues taken care of with her mom. For the next week, I'll be watching the list-- along with Darlene and and Debbie-- so you will hear from us if you need help. It may take a bit longer than usual-- but someone will check in daily, or several times throughout the day. As for me, I will be here until Jan

8 and then I'm spending a long weekend on the coast with my hubby. The 10th is our 32nd wedding anniversary. I hope it storms, and we can stay in our room and watch the ocean rage. I hope it clears up and we can see the migration of the whales and their calves as they hang out along the coast of Northern California. Truly, the coast is so magical this time of year- you don't get the summer fog-- so often times you can see clear out to the horizon. When I get back, I'm going to start putting my energy into helping my docs understand the signifigance of a Right Bundle Branch Block-- that is starting to interfer with my health. I know it's the sarc-- and what happens is that the right side of my heart is getting a late signal to beat-- and so it having to work very hard. It's beating at the same time as the left-- so the blood isn't oxygenating

like it should. I will be back online as usual, and the gang and I will be here for each and everyone. Love to us all, Tracie NS Co-owner/moderatorSee AOL's top rated recipes and easy ways to stay

in shape for winter.

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

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Hi Tracie,I tried to reply this morning but my message went into space! Not sure what happened but I wasn't up to rewriting until now.Congrats on your upcoming 32nd anniversery! I can't imagine a better or more peaceful/serene way to spend it than on the coast. The ocean has a calming effect and I know you will enjoy your time there.RBBB is one of the classic EKG abnormalities with cardiac sarcoid. Please know that I am here for you if there's anything at all that I can do. I have researched cardiac sarcoidosis up/down and left/right. My s Hopkins doctor has been instrumental in my education about this and has helped me so much. As always, you will be in my prayers.Blessings and Love,Beckytiodaat@... wrote: Ok gang, we love to have everyone check in. For all of you that don't take advantage of posting-- our "lurkers" out there-- come in and introduce yourself. We share a common journey, and the info shared is so vital to our well-being. New voices are always welcome.

Our dear Rose is going to take some time away, and has temporarily gone on "no mail." Her mother has Alzhemiers, and she has been trying to take care of Mom, along with her own health issues, and pick up the pieces for her grandkids and nieces and nephews. All that, along with the group- is just putting her into overwhelm right now. So-- please keep her in your hearts and prayers. She'll be back when she has some housing issues taken care of with her mom. For the next week, I'll be watching the list-- along with Darlene and and Debbie-- so you will hear from us if you need help. It may take a bit longer than usual-- but someone will check in daily, or several times throughout the day. As for me, I will be here until Jan 8 and then I'm spending a long weekend on the coast with

my hubby. The 10th is our 32nd wedding anniversary. I hope it storms, and we can stay in our room and watch the ocean rage. I hope it clears up and we can see the migration of the whales and their calves as they hang out along the coast of Northern California. Truly, the coast is so magical this time of year- you don't get the summer fog-- so often times you can see clear out to the horizon. When I get back, I'm going to start putting my energy into helping my docs understand the signifigance of a Right Bundle Branch Block-- that is starting to interfer with my health. I know it's the sarc-- and what happens is that the right side of my heart is getting a late signal to beat-- and so it having to work very hard. It's beating at the same time as the left-- so the blood isn't oxygenating like it should.

I will be back online as usual, and the gang and I will be here for each and everyone. Love to us all, Tracie NS Co-owner/moderatorSee AOL's top rated recipes and easy ways to stay in shape for winter.

Looking for last minute shopping deals? Find them fast with Yahoo! Search.

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Can you take too much MSM? I am up to 8 capsules a day.

, MSM is water soluble, so what your body doesn't need, leaves via your urine. It is not something you can overdose on. I take about 1500-2000 mg 3x a day-- and it seems to help so very much with the bone pain.

It sounds like you've had a busy and wonderful holiday season-- congrats on the weight loss. That is one issue I have to start working on myself. Really working on.

Take care, and thanks for checking in.

Hugs,

Tracie

NS Co-owner/moderatorSee AOL's top rated recipes and easy ways to stay in shape for winter.

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Hi Tracie,I tried to reply this morning but my message went into space! Not sure what happened but I wasn't up to rewriting until now.Congrats on your upcoming 32nd anniversery! I can't imagine a better or more peaceful/serene way to spend it than on the coast. The ocean has a calming effect and I know you will enjoy your time there.RBBB is one of the classic EKG abnormalities with cardiac sarcoid. Please know that I am here for you if there's anything at all that I can do. I have researched cardiac sarcoidosis up/down and left/right. My s Hopkins doctor has been instrumental in my education about this and has helped me so much. As always, you will be in my prayers.Blessings and Love,Beckytiodaat@... wrote: Ok gang, we love to have everyone check in. For all of you that don't take advantage of posting-- our "lurkers" out there-- come in and introduce yourself. We share a common journey, and the info shared is so vital to our well-being. New voices are always welcome.

Our dear Rose is going to take some time away, and has temporarily gone on "no mail." Her mother has Alzhemiers, and she has been trying to take care of Mom, along with her own health issues, and pick up the pieces for her grandkids and nieces and nephews. All that, along with the group- is just putting her into overwhelm right now. So-- please keep her in your hearts and prayers. She'll be back when she has some housing issues taken care of with her mom. For the next week, I'll be watching the list-- along with Darlene and and Debbie-- so you will hear from us if you need help. It may take a bit longer than usual-- but someone will check in daily, or several times throughout the day. As for me, I will be here until Jan 8 and then I'm spending a long weekend on the coast with

my hubby. The 10th is our 32nd wedding anniversary. I hope it storms, and we can stay in our room and watch the ocean rage. I hope it clears up and we can see the migration of the whales and their calves as they hang out along the coast of Northern California. Truly, the coast is so magical this time of year- you don't get the summer fog-- so often times you can see clear out to the horizon. When I get back, I'm going to start putting my energy into helping my docs understand the signifigance of a Right Bundle Branch Block-- that is starting to interfer with my health. I know it's the sarc-- and what happens is that the right side of my heart is getting a late signal to beat-- and so it having to work very hard. It's beating at the same time as the left-- so the blood isn't oxygenating like it should.

I will be back online as usual, and the gang and I will be here for each and everyone. Love to us all, Tracie NS Co-owner/moderatorSee AOL's top rated recipes and easy ways to stay in shape for winter.

Looking for last minute shopping deals? Find them fast with Yahoo! Search.

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Share on other sites

Can you take too much MSM? I am up to 8 capsules a day.

, MSM is water soluble, so what your body doesn't need, leaves via your urine. It is not something you can overdose on. I take about 1500-2000 mg 3x a day-- and it seems to help so very much with the bone pain.

It sounds like you've had a busy and wonderful holiday season-- congrats on the weight loss. That is one issue I have to start working on myself. Really working on.

Take care, and thanks for checking in.

Hugs,

Tracie

NS Co-owner/moderatorSee AOL's top rated recipes and easy ways to stay in shape for winter.

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Share on other sites

Thanks Becky, what do you have in the way of articles on RBBB and sarc? I know that heart attacks vary with different symptoms in women than in men-- but I had a horrible middle chest pain with my left arm and shoulder majorally hurting down to my bicep last week. Not sure what was up-- I was wound up pretty tight over some garbage going on-- so who knows. I know-- I have to get my butt into ER if it happens again.

I just feel really crummy, and have for quite a while now-- no energy, no stamina, winded and weak legs-- and it's not deconditioning. Athough I am out of shape again. (What shape would I be if I wasn't "out" of shape....) hmmm, just a thought-- it'll pass...

You know, it's like being a "lert." what do lerts look like? Probably better to be a lert than a nemic.

Anyway-- that's my story- and hopefully Ron will stick to it..

Love to all,

TracieSee AOL's top rated recipes and easy ways to stay in shape for winter.

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Thanks Becky, what do you have in the way of articles on RBBB and sarc? I know that heart attacks vary with different symptoms in women than in men-- but I had a horrible middle chest pain with my left arm and shoulder majorally hurting down to my bicep last week. Not sure what was up-- I was wound up pretty tight over some garbage going on-- so who knows. I know-- I have to get my butt into ER if it happens again.

I just feel really crummy, and have for quite a while now-- no energy, no stamina, winded and weak legs-- and it's not deconditioning. Athough I am out of shape again. (What shape would I be if I wasn't "out" of shape....) hmmm, just a thought-- it'll pass...

You know, it's like being a "lert." what do lerts look like? Probably better to be a lert than a nemic.

Anyway-- that's my story- and hopefully Ron will stick to it..

Love to all,

TracieSee AOL's top rated recipes and easy ways to stay in shape for winter.

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Hi

Tracie,

Congratulations,

that is a long time, especially these days to be married to the same person for

32 years. We will be celebrating 25 this year and I think that’s a long

time J. Oh I know what you mean about the storms and the calm, I grew up on

the coast and that is one thing I miss, the ocean. When we go anywhere where

the ocean is, I’ll just sit and listen, it is very claming. Enjoy your

time, and I will try to check in every day, especially with Rose out too. It’s

so hard to know what to do when it comes to aging parents. My Mother is 85,

and doing well, except her kids (not me, there are 7 of us) keep wanting to

move her around, she moved to Florida to live in the Sun and heat with my

sister, who has now decided to move to Michigan and plans on taking my Mom with

her, of which my Mom does not want to do! Long story, sometimes it’s

easier if just one person is making the arrangements although not easy. My

husband and I went to Denver to see a Show, and celebrate in the big city for

his birthday, we had a good time, but I hit the bed when we got home, I don’t

sleep well when I’m not in my comfy bed!

So you

just have fun, I keep my eyes open, and my prayers continued. Blessings to

you, Marla

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Mac Tosh

Sent: Saturday, December 29, 2007

12:55 PM

To: Neurosarcoidosis

Subject: Re:

update

Hi Tracie,

I tried to reply this morning but my message went into space! Not sure what

happened but I wasn't up to rewriting until now.

Congrats on your upcoming 32nd anniversery! I can't imagine a better or more

peaceful/serene way to spend it than on the coast. The ocean has a calming

effect and I know you will enjoy your time there.

RBBB is one of the classic EKG abnormalities with cardiac sarcoid. Please know

that I am here for you if there's anything at all that I can do. I have

researched cardiac sarcoidosis up/down and left/right. My s Hopkins doctor has been

instrumental in my education about this and has helped me so much. As always,

you will be in my prayers.

Blessings and Love,

Becky

tiodaat (AT) aol (DOT) com

wrote:

Ok gang, we love to

have everyone check in. For all of you that don't take advantage of

posting-- our " lurkers " out there-- come in and introduce

yourself. We share a common journey, and the info shared is so vital to

our well-being. New voices are always welcome.

Our dear Rose is going

to take some time away, and has temporarily gone on " no mail. "

Her mother has Alzhemiers, and she has been trying to take care of Mom, along

with her own health issues, and pick up the pieces for her grandkids and nieces

and nephews. All that, along with the group- is just putting her into

overwhelm right now. So-- please keep her in your hearts and

prayers. She'll be back when she has some housing issues taken care of

with her mom.

For the next week,

I'll be watching the list-- along with Darlene and and Debbie-- so you

will hear from us if you need help. It may take a bit longer than usual--

but someone will check in daily, or several times throughout the day.

As for me, I will be

here until Jan 8 and then I'm spending a long weekend on the coast with my

hubby. The 10th is our 32nd wedding anniversary. I hope it storms,

and we can stay in our room and watch the ocean rage. I hope it clears up

and we can see the migration of the whales and their calves as they hang out

along the coast of Northern

California. Truly, the coast is so magical this

time of year- you don't get the summer fog-- so often times you can see

clear out to the horizon.

When I get back, I'm

going to start putting my energy into helping my docs understand the

signifigance of a Right Bundle Branch Block-- that is starting to interfer with

my health. I know it's the sarc-- and what happens is that the right side

of my heart is getting a late signal to beat-- and so it having to work very

hard. It's beating at the same time as the left-- so the blood isn't

oxygenating like it should.

I will be back online

as usual, and the gang and I will be here for each and everyone.

Love to us all,

Tracie

NS Co-owner/moderator

See AOL's top

rated recipes and easy

ways to stay in shape for winter.

Looking for last minute shopping deals? Find

them fast with Yahoo! Search.

Link to comment
Share on other sites

Hi

Tracie,

Congratulations,

that is a long time, especially these days to be married to the same person for

32 years. We will be celebrating 25 this year and I think that’s a long

time J. Oh I know what you mean about the storms and the calm, I grew up on

the coast and that is one thing I miss, the ocean. When we go anywhere where

the ocean is, I’ll just sit and listen, it is very claming. Enjoy your

time, and I will try to check in every day, especially with Rose out too. It’s

so hard to know what to do when it comes to aging parents. My Mother is 85,

and doing well, except her kids (not me, there are 7 of us) keep wanting to

move her around, she moved to Florida to live in the Sun and heat with my

sister, who has now decided to move to Michigan and plans on taking my Mom with

her, of which my Mom does not want to do! Long story, sometimes it’s

easier if just one person is making the arrangements although not easy. My

husband and I went to Denver to see a Show, and celebrate in the big city for

his birthday, we had a good time, but I hit the bed when we got home, I don’t

sleep well when I’m not in my comfy bed!

So you

just have fun, I keep my eyes open, and my prayers continued. Blessings to

you, Marla

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Mac Tosh

Sent: Saturday, December 29, 2007

12:55 PM

To: Neurosarcoidosis

Subject: Re:

update

Hi Tracie,

I tried to reply this morning but my message went into space! Not sure what

happened but I wasn't up to rewriting until now.

Congrats on your upcoming 32nd anniversery! I can't imagine a better or more

peaceful/serene way to spend it than on the coast. The ocean has a calming

effect and I know you will enjoy your time there.

RBBB is one of the classic EKG abnormalities with cardiac sarcoid. Please know

that I am here for you if there's anything at all that I can do. I have

researched cardiac sarcoidosis up/down and left/right. My s Hopkins doctor has been

instrumental in my education about this and has helped me so much. As always,

you will be in my prayers.

Blessings and Love,

Becky

tiodaat (AT) aol (DOT) com

wrote:

Ok gang, we love to

have everyone check in. For all of you that don't take advantage of

posting-- our " lurkers " out there-- come in and introduce

yourself. We share a common journey, and the info shared is so vital to

our well-being. New voices are always welcome.

Our dear Rose is going

to take some time away, and has temporarily gone on " no mail. "

Her mother has Alzhemiers, and she has been trying to take care of Mom, along

with her own health issues, and pick up the pieces for her grandkids and nieces

and nephews. All that, along with the group- is just putting her into

overwhelm right now. So-- please keep her in your hearts and

prayers. She'll be back when she has some housing issues taken care of

with her mom.

For the next week,

I'll be watching the list-- along with Darlene and and Debbie-- so you

will hear from us if you need help. It may take a bit longer than usual--

but someone will check in daily, or several times throughout the day.

As for me, I will be

here until Jan 8 and then I'm spending a long weekend on the coast with my

hubby. The 10th is our 32nd wedding anniversary. I hope it storms,

and we can stay in our room and watch the ocean rage. I hope it clears up

and we can see the migration of the whales and their calves as they hang out

along the coast of Northern

California. Truly, the coast is so magical this

time of year- you don't get the summer fog-- so often times you can see

clear out to the horizon.

When I get back, I'm

going to start putting my energy into helping my docs understand the

signifigance of a Right Bundle Branch Block-- that is starting to interfer with

my health. I know it's the sarc-- and what happens is that the right side

of my heart is getting a late signal to beat-- and so it having to work very

hard. It's beating at the same time as the left-- so the blood isn't

oxygenating like it should.

I will be back online

as usual, and the gang and I will be here for each and everyone.

Love to us all,

Tracie

NS Co-owner/moderator

See AOL's top

rated recipes and easy

ways to stay in shape for winter.

Looking for last minute shopping deals? Find

them fast with Yahoo! Search.

Link to comment
Share on other sites

my

husband turned 51 on the 28th, my brother’s birthday is on the

27th, let me think, I think he turned 54. I’m coming up on

the big 50 this year, I didn’t like turning 40, but I think this whole 50

thing won’t be too bad, especially since I feel more like 80.

That’s

great about your weight, I got an Ab lounge for Christmas from the kids, (I asked

for it), it’s easy and I can feel the work out without too much energy

spent, well see how it goes? I do treadmill too, but can only do like 10

mins. I think the secret is in the diet, I didn’t get my fudge made, but

my daughter, my son’s girlfriend and I made “a lot” of sugar

cookies with frosting and all, one of my weaknesses. That is just so great to

lose the weight! Keep it up I’m sure it’s worth the energy

gained.

Happy

New Year, Marla

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Solberg

Sent: Saturday, December 29, 2007

3:59 AM

To: Neurosarcoidosis

Subject: Re:

update

Tracie, I hope

you truly enjoy your anniversary weekend. The whale watching would

especially be wonderful. I'm sorry to hear about Rose and I suppose we

all, at one time or another, will have to do the same for our parents. My

prayers go out towards her. I hope she tries to pace herself during this

stressful time. I also pray that your doctors will get

an eye-opening from you on your next visit with them. As

for me, I had to get new glasses AGAIN. Every two years, since my last

big flare eight years ago, brings worsening eyesight and new glasses. It

might be more often but insurance only pays for every other year. My

mammogram was normal(sigh...:)). I have lost 17 lbs. so far on Nutri

-System...despite Thanksgiving at my moms; my youngest son's (turkey and all

the fixins) birthday dinner(23 on the 10th) with him, his wife, her parents,

me, my husband and oldest son at our place; Christmas at my hubby's parents;

Christmas at my moms and a birthday dinner for my husband(52 on the 27th) once

again at our place. I didn't make any Christmas sweets of any kind, like

fudge, this year and that has helped a lot. Giving up the sweets and

eating a LARGE salad every day has upped my energy a lot, too. I did have

one severe hand pain attack last Saturday and went on some narcotic pain pills

for a few days. The cold weather is early and more severe than usual this

year in Wisconsin.

We had another 8 inches of snow today. On the news it said that for the

month of December we are up about 1 foot of snow more than usual for this time

of year. I dragged(drug???)...out my hot wax machine to put my hands

in on a regular basis to see if it will stem off the pain. Can you take

too much MSM? I am up to 8 capsules a day. I hope everyone

else is hanging in there and keeping warm and relaxed. sorry for the long

post....hugs S.

tiodaat (AT) aol (DOT) com

wrote:

Ok gang, we love to

have everyone check in. For all of you that don't take advantage of

posting-- our " lurkers " out there-- come in and introduce

yourself. We share a common journey, and the info shared is so vital to

our well-being. New voices are always welcome.

Our dear Rose is going

to take some time away, and has temporarily gone on " no mail. " Her

mother has Alzhemiers, and she has been trying to take care of Mom, along with

her own health issues, and pick up the pieces for her grandkids and nieces and

nephews. All that, along with the group- is just putting her into

overwhelm right now. So-- please keep her in your hearts and

prayers. She'll be back when she has some housing issues taken care of

with her mom.

For the next week,

I'll be watching the list-- along with Darlene and and Debbie-- so you

will hear from us if you need help. It may take a bit longer than usual--

but someone will check in daily, or several times throughout the day.

As for me, I will be

here until Jan 8 and then I'm spending a long weekend on the coast with my

hubby. The 10th is our 32nd wedding anniversary. I hope it storms,

and we can stay in our room and watch the ocean rage. I hope it clears up

and we can see the migration of the whales and their calves as they hang out

along the coast of Northern

California. Truly, the coast is so magical this

time of year- you don't get the summer fog-- so often times you can see

clear out to the horizon.

When I get back, I'm

going to start putting my energy into helping my docs understand the

signifigance of a Right Bundle Branch Block-- that is starting to interfer with

my health. I know it's the sarc-- and what happens is that the right side

of my heart is getting a late signal to beat-- and so it having to work very

hard. It's beating at the same time as the left-- so the blood isn't

oxygenating like it should.

I will be back online

as usual, and the gang and I will be here for each and everyone.

Love to us all,

Tracie

NS Co-owner/moderator

See AOL's top

rated recipes and easy

ways to stay in shape for winter.

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try

it now.

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my

husband turned 51 on the 28th, my brother’s birthday is on the

27th, let me think, I think he turned 54. I’m coming up on

the big 50 this year, I didn’t like turning 40, but I think this whole 50

thing won’t be too bad, especially since I feel more like 80.

That’s

great about your weight, I got an Ab lounge for Christmas from the kids, (I asked

for it), it’s easy and I can feel the work out without too much energy

spent, well see how it goes? I do treadmill too, but can only do like 10

mins. I think the secret is in the diet, I didn’t get my fudge made, but

my daughter, my son’s girlfriend and I made “a lot” of sugar

cookies with frosting and all, one of my weaknesses. That is just so great to

lose the weight! Keep it up I’m sure it’s worth the energy

gained.

Happy

New Year, Marla

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Solberg

Sent: Saturday, December 29, 2007

3:59 AM

To: Neurosarcoidosis

Subject: Re:

update

Tracie, I hope

you truly enjoy your anniversary weekend. The whale watching would

especially be wonderful. I'm sorry to hear about Rose and I suppose we

all, at one time or another, will have to do the same for our parents. My

prayers go out towards her. I hope she tries to pace herself during this

stressful time. I also pray that your doctors will get

an eye-opening from you on your next visit with them. As

for me, I had to get new glasses AGAIN. Every two years, since my last

big flare eight years ago, brings worsening eyesight and new glasses. It

might be more often but insurance only pays for every other year. My

mammogram was normal(sigh...:)). I have lost 17 lbs. so far on Nutri

-System...despite Thanksgiving at my moms; my youngest son's (turkey and all

the fixins) birthday dinner(23 on the 10th) with him, his wife, her parents,

me, my husband and oldest son at our place; Christmas at my hubby's parents;

Christmas at my moms and a birthday dinner for my husband(52 on the 27th) once

again at our place. I didn't make any Christmas sweets of any kind, like

fudge, this year and that has helped a lot. Giving up the sweets and

eating a LARGE salad every day has upped my energy a lot, too. I did have

one severe hand pain attack last Saturday and went on some narcotic pain pills

for a few days. The cold weather is early and more severe than usual this

year in Wisconsin.

We had another 8 inches of snow today. On the news it said that for the

month of December we are up about 1 foot of snow more than usual for this time

of year. I dragged(drug???)...out my hot wax machine to put my hands

in on a regular basis to see if it will stem off the pain. Can you take

too much MSM? I am up to 8 capsules a day. I hope everyone

else is hanging in there and keeping warm and relaxed. sorry for the long

post....hugs S.

tiodaat (AT) aol (DOT) com

wrote:

Ok gang, we love to

have everyone check in. For all of you that don't take advantage of

posting-- our " lurkers " out there-- come in and introduce

yourself. We share a common journey, and the info shared is so vital to

our well-being. New voices are always welcome.

Our dear Rose is going

to take some time away, and has temporarily gone on " no mail. " Her

mother has Alzhemiers, and she has been trying to take care of Mom, along with

her own health issues, and pick up the pieces for her grandkids and nieces and

nephews. All that, along with the group- is just putting her into

overwhelm right now. So-- please keep her in your hearts and

prayers. She'll be back when she has some housing issues taken care of

with her mom.

For the next week,

I'll be watching the list-- along with Darlene and and Debbie-- so you

will hear from us if you need help. It may take a bit longer than usual--

but someone will check in daily, or several times throughout the day.

As for me, I will be

here until Jan 8 and then I'm spending a long weekend on the coast with my

hubby. The 10th is our 32nd wedding anniversary. I hope it storms,

and we can stay in our room and watch the ocean rage. I hope it clears up

and we can see the migration of the whales and their calves as they hang out

along the coast of Northern

California. Truly, the coast is so magical this

time of year- you don't get the summer fog-- so often times you can see

clear out to the horizon.

When I get back, I'm

going to start putting my energy into helping my docs understand the

signifigance of a Right Bundle Branch Block-- that is starting to interfer with

my health. I know it's the sarc-- and what happens is that the right side

of my heart is getting a late signal to beat-- and so it having to work very

hard. It's beating at the same time as the left-- so the blood isn't

oxygenating like it should.

I will be back online

as usual, and the gang and I will be here for each and everyone.

Love to us all,

Tracie

NS Co-owner/moderator

See AOL's top

rated recipes and easy

ways to stay in shape for winter.

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try

it now.

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Share on other sites

Tracie, I'm taking about 4,000 mg. a day but all at once. So I could take 3,000- 3 times a day and maybe fend off some of these pain attacks on my hands, etc. I've had pain in my left hand, arm, etc. getting worse over the last three years and had the whole series of heart tests done including the newer nuclear heart tests. They all turned out fine. My doc didn't think it was the heart(causing the pain...) but it's a good idea to have those tests done anyway...with having sarc. The cold and/or wet weather makes this pain show up so much worse. It hardly bothers me in the summer at all. I am also going to use my hot wax machine daily and my Norwegian Neutrogena lotion to help curb the onset of some of these symptoms. I also wear warm gloves to bed on 'bad' nights. But you gotta do what you gotta do... despite

appearances...lol:)! NutriSystem has been working well for me. I am on the diabetic program. They add stuff to the food to curb hunger(maybe they should add more...lol). And some heart-healthy omega fatty acids(am I saying that right...?). I am not always up to preparing food so it's been so convenient to have it all ready to eat. Just add the fruits and fresh vegetables. On holidays, etc. I eat what everyone else is eating(just less of it) and then start again the next day. I am sure my doctors will all be happy for my weight loss and I have a long, Loooong way to go. Maybe then I can think about starting walking again in the spring. hugs S.tiodaat@... wrote: In a message dated 12/29/2007 6:51:46 A.M. Pacific Standard Time, mary_s777 (AT) yahoo (DOT) com writes: Can you take too much MSM? I am up to 8 capsules a day. , MSM is water soluble, so what your body doesn't need, leaves via your urine. It is not something you can overdose on. I take about 1500-2000 mg 3x a day-- and it seems to help so very much with the bone pain. It sounds like

you've had a busy and wonderful holiday season-- congrats on the weight loss. That is one issue I have to start working on myself. Really working on. Take care, and thanks for checking in. Hugs, Tracie NS Co-owner/moderatorSee AOL's top rated recipes and easy ways to stay in shape for winter.

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Marla, my 40's seem like a blur to me because I had my last big flare when I was 42. I'm 51 now. That's actually why I started up with scrapbooking 2 years ago because i was having so much trouble with my memory. So far I'm having much better luck with my 50's...lol. Marla, ALL sweets are my downfall especially anything chocolate! I think the blood sugar fluctuations didn't do much for my memory(or mood) either. The more I read about sugar...the more I knew I needed to cut way down on it. I was excited to turn 50...like I was so glad I made it that far considering all the health problems I have had. To me it's like earning a badge of honor. The exercise thing will wait til I have lost a bit more weight and , even then, it will probably be walking. I have a recumbant bike but my right knee has

arthritis(they say...) and too much movement will make it 'act up'. I have abdominal symptoms that also rule out certain movements and exercises. I'll be the 'turtle' and take it 'slow and easy' and still win the race. It'll just take me a lot longer. Let me know how that Ab Lounger works for you...but take it easy and don't overdo it. hugs S.Marla Bramer wrote: my husband turned 51 on the 28th, my brother’s birthday is on the 27th, let me think, I think he turned 54. I’m coming up on the big 50 this year, I didn’t like turning 40, but I think this whole 50 thing won’t be too bad, especially since I feel more like 80. That’s great about your weight, I got an Ab lounge for Christmas from the kids, (I asked for it), it’s easy and I can feel the work out without too much energy spent, well see how it goes? I do treadmill too, but can only do like 10 mins. I think the secret is in the diet, I didn’t get my fudge made, but my daughter, my son’s girlfriend and I made “a lot” of sugar cookies with frosting and all, one of

my weaknesses. That is just so great to lose the weight! Keep it up I’m sure it’s worth the energy gained. Happy New Year, Marla From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Solberg Sent: Saturday, December 29, 2007 3:59 AM To: Neurosarcoidosis Subject: Re: update Tracie, I hope you truly enjoy your anniversary weekend. The whale watching would especially be wonderful. I'm sorry to hear about Rose and I suppose we all, at one time or another, will have to do the same for our parents. My prayers go out towards her. I hope she tries to pace herself during this stressful time. I also pray that your doctors will get an eye-opening from you on your next visit with them. As for me, I had to get new glasses AGAIN. Every two years, since my last big flare eight years ago, brings worsening eyesight and new glasses. It might be more often but insurance only pays for every other year. My mammogram was normal(sigh...:)). I have lost 17 lbs. so far on Nutri -System...despite Thanksgiving at my moms; my youngest son's (turkey and all the fixins)

birthday dinner(23 on the 10th) with him, his wife, her parents, me, my husband and oldest son at our place; Christmas at my hubby's parents; Christmas at my moms and a birthday dinner for my husband(52 on the 27th) once again at our place. I didn't make any Christmas sweets of any kind, like fudge, this year and that has helped a lot. Giving up the sweets and eating a LARGE salad every day has upped my energy a lot, too. I did have one severe hand pain attack last Saturday and went on some narcotic pain pills for a few days. The cold weather is early and more severe than usual this year in Wisconsin. We had another 8 inches of snow today. On the news it said that for the month of December we are up about 1 foot of snow more than usual for this time of year. I dragged(drug???)...out my hot wax machine to put my hands in on a regular basis to see if it will stem off the pain. Can you take too much

MSM? I am up to 8 capsules a day. I hope everyone else is hanging in there and keeping warm and relaxed. sorry for the long post....hugs S. tiodaat (AT) aol (DOT) com wrote: Ok gang, we love to have everyone check in. For all of you that don't take advantage of posting-- our "lurkers" out there-- come in and introduce yourself. We share a common journey, and the info shared is so vital to our well-being. New voices are always welcome. Our dear Rose is going to take some time away, and has temporarily gone on "no mail." Her mother has Alzhemiers, and she has been trying to take care of Mom, along with her own health issues, and pick up the pieces for her grandkids and nieces and nephews. All that, along with the group- is just putting her into overwhelm right now. So-- please keep her in your hearts and prayers. She'll be back when she has some housing issues taken care of with her mom. For the next week, I'll be watching the list-- along with Darlene and and Debbie-- so you will hear from us if you need help. It may take a bit longer than usual-- but someone will check in daily, or several times throughout the day. As for me, I will be here until Jan 8 and then I'm spending a long weekend on the coast with my hubby. The 10th is our 32nd wedding anniversary. I hope it storms, and we can stay in our room and watch the ocean rage. I hope it clears up and we can see the migration of the whales and their calves as they hang out along the coast of Northern California. Truly, the coast is so magical this time of year- you don't get the summer fog-- so often times you can see clear out to the horizon. When I get back, I'm going to start putting my energy into helping my docs understand the signifigance of a Right Bundle Branch Block-- that is starting to interfer with my health. I know it's the sarc-- and what happens is that the right side of my heart is getting a late signal to beat-- and so it having to work very hard. It's beating at the same time as the left-- so the blood isn't oxygenating like it should. I will be back online as usual, and the gang and I will be here for each and everyone. Love to us all, Tracie NS Co-owner/moderator See AOL's top rated recipes and easy ways to stay in shape for winter. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

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Hi Tracie,I don't save them but I can go back and find them. Trina (daughter) is my "cut and paste" computer girl so will get her involved and find some articles for you. Much of my info has come from Dr. Moller (pulmonologist) at s Hopkins. He was the one who told me I had cardiac sarcoidosis to begin with when my cardilologist here in Tampa had told me for 2 yrs that my heart was not affected (this same cardiologist told me that his mother had sarcoidosis!). Plus, HE did the thallium stress tests and echos right in his own office and interpreted the results (which he wrote as positive on TWO stess tests 2 yrs apart!). I can't explain why he told me what he did except to say that he told me he "didn't want me to be an experiment"...hello...that's was not his choice and I want to be alive!!! Also, I was told by another physician (personal friend) that

this cardio was plain lazy and I needed to see someone else. So, I changed cardiologists and right away the new cardio told me I HAD to get an AICD. Every case is different but I had been having numerous episodes of palpitations with proof on a 30 day event monitor (this was back in April 2006) that showed a-fib, PVC's galore, and many other abnormalities. This new cardio referred me to an EP doctor (good at what he does but not a good person...long story). Your RBBB could be r/t to nonsarcoid but with your hx it's better to get it checked out since there are many more of us with cardiac involvement than was ever believed before. Since the electrical conduction system is how cardiac sarcoid affects the heart, a RBBB is significant. I will get Trina helping me with this asap (it's 0624) as soon as she wakes up. You are in my prayers

always. And, Tracie...you GO to the ER if you have those pains again!!!Blessings and Love,Beckytiodaat@... wrote: Thanks Becky, what do you have in the way of articles on RBBB and sarc? I know that heart attacks vary with different symptoms in women than in men-- but I had a horrible middle chest pain with my left arm and

shoulder majorally hurting down to my bicep last week. Not sure what was up-- I was wound up pretty tight over some garbage going on-- so who knows. I know-- I have to get my butt into ER if it happens again. I just feel really crummy, and have for quite a while now-- no energy, no stamina, winded and weak legs-- and it's not deconditioning. Athough I am out of shape again. (What shape would I be if I wasn't "out" of shape....) hmmm, just a thought-- it'll pass... You know, it's like being a "lert." what do lerts look like? Probably better to be a lert than a nemic. Anyway-- that's my story- and hopefully Ron will stick to it.. Love to all, TracieSee AOL's top rated recipes and easy ways to stay in shape for winter.

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So I could take 3,000- 3 times a day and maybe fend off some of these pain attacks on my hands, etc.

Exactly-- it's amazes me how much it helps. I know that if I am having a day where my neuropathy is really nasty (today) I have to check myself to see if my sugar is up or if I'm dehydrated- (which is an issue during winter especially). The Neutrogena sures makes a difference with the small nerve fibre neuropathy.

The other thing I have to do is to pay close attention to how I'm breathing. If I am hurting then I have a tendency to breath shallowly-- and that means that I'm getting to much carbon dioxide buildup in my lungs-- so I have to literally tell myself to sit up straight and exhale fully, and then bring in as deep a breath as I can-- and within a few minutes, the tingling of my hands and feet gets better-- so I know that plays a huge part in it for me.

Take care,

TracieSee AOL's top rated recipes and easy ways to stay in shape for winter.

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Have a wonderful time you certainly deserve it and bring back pictures if you can...Connietiodaat@... wrote: Ok gang, we love to have everyone check in. For all of you that don't take advantage of posting-- our "lurkers" out there-- come in and introduce yourself. We share a common journey, and the info shared is so vital to our well-being. New voices are always welcome. Our dear Rose is going to take

some time away, and has temporarily gone on "no mail." Her mother has Alzhemiers, and she has been trying to take care of Mom, along with her own health issues, and pick up the pieces for her grandkids and nieces and nephews. All that, along with the group- is just putting her into overwhelm right now. So-- please keep her in your hearts and prayers. She'll be back when she has some housing issues taken care of with her mom. For the next week, I'll be watching the list-- along with Darlene and and Debbie-- so you will hear from us if you need help. It may take a bit longer than usual-- but someone will check in daily, or several times throughout the day. As for me, I will be here until Jan 8 and then I'm spending a long weekend on the coast with my hubby. The 10th is our 32nd wedding

anniversary. I hope it storms, and we can stay in our room and watch the ocean rage. I hope it clears up and we can see the migration of the whales and their calves as they hang out along the coast of Northern California. Truly, the coast is so magical this time of year- you don't get the summer fog-- so often times you can see clear out to the horizon. When I get back, I'm going to start putting my energy into helping my docs understand the signifigance of a Right Bundle Branch Block-- that is starting to interfer with my health. I know it's the sarc-- and what happens is that the right side of my heart is getting a late signal to beat-- and so it having to work very hard. It's beating at the same time as the left-- so the blood isn't oxygenating like it should. I will be back online as

usual, and the gang and I will be here for each and everyone. Love to us all, Tracie NS Co-owner/moderator See AOL's top rated recipes and easy ways to stay in shape for winter.

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Becky, I would greatly appreciate you sharing this info, too. There are many in the group who have heart sarc or could have it and not know it. I have had slight involvement in the past but seem to be clear...for now. But knowing the symptoms and what to look for could even save someone's life, couldn't it?!... Heart problems for a sarcoid patient is a whole new 'ball of wax' and patients and doctors alike need all the info they can get. hugs S.Mac Tosh wrote: Hi Tracie,I don't save them but I can go back and find them. Trina (daughter) is my "cut and paste" computer girl so will get her involved and find some articles for you. Much of my info has come from Dr. Moller (pulmonologist) at s Hopkins. He was the one who told me I had cardiac sarcoidosis to begin with when my cardilologist here in Tampa had told me for 2 yrs that my heart was not affected (this same cardiologist told me that his mother had sarcoidosis!). Plus, HE did the thallium stress tests and echos right in his own office and interpreted the results (which he wrote as positive on TWO stess tests 2 yrs apart!). I can't explain why he told me what he did except to say that he told me he "didn't want me to be an

experiment"...hello...that's was not his choice and I want to be alive!!! Also, I was told by another physician (personal friend) that this cardio was plain lazy and I needed to see someone else. So, I changed cardiologists and right away the new cardio told me I HAD to get an AICD. Every case is different but I had been having numerous episodes of palpitations with proof on a 30 day event monitor (this was back in April 2006) that showed a-fib, PVC's galore, and many other abnormalities. This new cardio referred me to an EP doctor (good at what he does but not a good person...long story). Your RBBB could be r/t to nonsarcoid but with your hx it's better to get it checked out since there are many more of us with cardiac involvement than was ever believed before. Since the electrical conduction system is how cardiac sarcoid affects the heart, a RBBB is significant. I will get Trina helping me

with this asap (it's 0624) as soon as she wakes up. You are in my prayers always. And, Tracie...you GO to the ER if you have those pains again!!!Blessings and Love,Beckytiodaat (AT) aol (DOT) com wrote: Thanks Becky, what do you have in the way of articles on RBBB and sarc? I know that heart attacks vary with different symptoms in women than in men-- but I had a horrible middle chest pain with my left arm and shoulder majorally hurting down to my bicep last week. Not sure what was up-- I was wound up pretty

tight over some garbage going on-- so who knows. I know-- I have to get my butt into ER if it happens again. I just feel really crummy, and have for quite a while now-- no energy, no stamina, winded and weak legs-- and it's not deconditioning. Athough I am out of shape again. (What shape would I be if I wasn't "out" of shape....) hmmm, just a thought-- it'll pass... You know, it's like being a "lert." what do lerts look like? Probably better to be a lert than a nemic. Anyway-- that's my story- and hopefully Ron will stick to it.. Love to all, TracieSee AOL's top rated recipes and easy ways to stay in shape for winter. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

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  • 2 years later...

I just got home from Duke, and we left the house this morning at 7.

Ugh. Long day.

I had my small bowel follow through done today, and everything went

fine. I did get very lightheaded with the fasting, but they let me

have a few sips of juice after I drank the barium. The radiologist

said my intestines are very photogenic and that there's no sign of

inflammation or strictures at all =)

So I guess this means all my issues are still coming from my colon. I

just had a lot of bloodwork done, and all the inflammation markers

were up, and I'm anemic again (sigh) and a stool test I also had done

showed inflammation.

Soooo, today I have to start azathioprine. Or however you spell it.

I'm totally in shock. But apparently there's no choice =(

And Amelia, I showed my GI doctor your email that you sent me about

checking my adrenals, and she said that for adrenal insufficiency,

usually there is a sodium/potassium inbalance and some other very

specific indicator that I didn't have. So she didn't think it was an

issue. She said I could talk to my endocrinologist about it though if

I really wanted to.

Peace =)

Alyssa 15 yo

UC April 2008, dx Sept 2008

SCD June 2009 (restarted)

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I just got home from Duke, and we left the house this morning at 7.

Ugh. Long day.

I had my small bowel follow through done today, and everything went

fine. I did get very lightheaded with the fasting, but they let me

have a few sips of juice after I drank the barium. The radiologist

said my intestines are very photogenic and that there's no sign of

inflammation or strictures at all =)

So I guess this means all my issues are still coming from my colon. I

just had a lot of bloodwork done, and all the inflammation markers

were up, and I'm anemic again (sigh) and a stool test I also had done

showed inflammation.

Soooo, today I have to start azathioprine. Or however you spell it.

I'm totally in shock. But apparently there's no choice =(

And Amelia, I showed my GI doctor your email that you sent me about

checking my adrenals, and she said that for adrenal insufficiency,

usually there is a sodium/potassium inbalance and some other very

specific indicator that I didn't have. So she didn't think it was an

issue. She said I could talk to my endocrinologist about it though if

I really wanted to.

Peace =)

Alyssa 15 yo

UC April 2008, dx Sept 2008

SCD June 2009 (restarted)

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Hi Alyssa,

I'm glad the upper GI showed no problems. I know it is a shock. You have been an

amazing trooper on SCD, especially for someone your age. I hope you feel better

soon. You have learned a lot about nutrition and keeping yourself healthy, and

it will help.

PJ

>

> I just got home from Duke, and we left the house this morning at 7.

> Ugh. Long day.

>

> I had my small bowel follow through done today, and everything went

> fine. I did get very lightheaded with the fasting, but they let me

> have a few sips of juice after I drank the barium. The radiologist

> said my intestines are very photogenic and that there's no sign of

> inflammation or strictures at all =)

>

> So I guess this means all my issues are still coming from my colon. I

> just had a lot of bloodwork done, and all the inflammation markers

> were up, and I'm anemic again (sigh) and a stool test I also had done

> showed inflammation.

>

> Soooo, today I have to start azathioprine. Or however you spell it.

> I'm totally in shock. But apparently there's no choice =(

>

> And Amelia, I showed my GI doctor your email that you sent me about

> checking my adrenals, and she said that for adrenal insufficiency,

> usually there is a sodium/potassium inbalance and some other very

> specific indicator that I didn't have. So she didn't think it was an

> issue. She said I could talk to my endocrinologist about it though if

> I really wanted to.

>

> Peace =)

> Alyssa 15 yo

> UC April 2008, dx Sept 2008

> SCD June 2009 (restarted)

>

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