Re: Update

[Guest guest]

Terri, I know what you mean. I have the lapidary saw, the grinding and polishing wheels, and I have yet to use it. I bought it just before this episode of sarc (7 yrs ago) and it drives nuts that I've not done anything with it. My beading has my attention, but I am thinking that I could do some wirewrap around some nice gemstones, and take it one step farther. I am putting my stuff up in my local hair salon, and I'm hoping that I can put together a couple of home parties and get some of it sold.

It is hard to have to plan everything-- and even with careful planning, I find that I end up cancelling too often.

Chronic illness isn't for sissy's that's for real sure!

Hugs,

Tracie

update

Hey Guys,First off, Tracie, you stated so much what a lot of us feel. The lossof what we used to be will always be painful. Of course for me, and Iwon't go into a lot of detail, my faith has been getting me through. Being able to be spontaneous is what I miss the most. I have to planeverything out. My identity is not tied up in a job anymore but thatdoesn't mean I can't miss it. I just try to be there for my family andfriends emotionally since my body won't let me do it physically.I love doing stained glass but the fatigue keeps me from getting it doneright now. My husband tells me I should get rid of my stuff but I willbe damned. there will come a time when I can do it. The cytoxan washelping a great bit and I have found a new doc locally who is trying tohelp me. So there is hope and always will be hope for me - and for allof you.Take care everyone and I will wait to hear from

all of you.Terri G.

[Guest guest]

Greg

your right you took the first step which is the hardest. I have been there

and some days feel I am on the way back to that dark spot.

With the love of my family and the understanding of friends such as you I

have been able to control my depression, almost.

My wish to remain active doesn't help. But my wish to be here for my

children and grandchildren does.

I will pray with all my might that you overcome this affliction. Yes

sometimes I feel it is worse than the NS. At least with NS you can put a

finger on what it is. You will get control of this because of your desire

to do so.

God bless you and keep your strong.

Hang in there friend. there is light at the end of the tunnel.

With respect and hopes

Jackie

Update

> Hello All I hope you are all doing well. Today will be hardest day for me.

> I have have and some others have notice signs of depression in me. I had

> the strength to admitt that I needed help. I even had the strength to find

> this help. Now the the tough part for me and my screwed up ego is today.

> Today I will actually begin the process of healing and getting better by

> accepting this help. Today I will see the Doctor and I am trying to steel

> myself to actually accept this help. I pray that I have the strength to

> actually complete this and get the help I need. Because I want to be here

> to see more of my daughters life and I want to make amends to the one ture

> love of my life.

>

> I blame the Prednisone and my condition of Nuerosarcoidosis for all of

> this. But is that true?? I do not know. But I will get better and I will

> find my way back to work. Dang I really miss it. I loved fixing those cars

> and making my clients day.

>

> I wish you all health and wellness. And I am sorry I have not been on-line

> much here. Please understand that what I am fighting at this time is more

> scary to me then any of the combat I was in amd I will need all of my

> strength to over come myself and get better.

>

>

>

> Greg aka Krumdawg

> " Slightly confused .... but who isn't these days? "

>

>

>

>

> ------------------------------------

>

> ~~~~ *** ~~~ *** ~~~ *** ~~~~

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[Guest guest]

Hang in there, Greg! Being a male, must be even harder! I see the signs of what you're going thru--are the same, if not similar, as what my husband experienced. I applaud you in accepting the idea of needing help and reaching out to do so. Focus on the comment you mentioned about wanting to be there in your daughter's life and make amends to the one true love in your life. Each day is a fighting battle for my husband--in fact, the bad outweighs the good, majority of the time. There are times I just want to give up, but I'm constantly looking up and believe that I could not go on without the strength of my Lord, my God. Don't get me wrong, you will still have your have bad days. Lets believe the "good" will outweigh the "bad." On that note, I will continue to pray for strength and wisdom, not

only for you, but for all the other family members affiliated with this support group. God Bless!

Subject: UpdateTo: Neurosarcoidosis Date: Monday, February 15, 2010, 10:13 AM

Hello All I hope you are all doing well. Today will be hardest day for me. I have have and some others have notice signs of depression in me. I had the strength to admitt that I needed help. I even had the strength to find this help. Now the the tough part for me and my screwed up ego is today. Today I will actually begin the process of healing and getting better by accepting this help. Today I will see the Doctor and I am trying to steel myself to actually accept this help. I pray that I have the strength to actually complete this and get the help I need. Because I want to be here to see more of my daughters life and I want to make amends to the one ture love of my life. I blame the Prednisone and my condition of Nuerosarcoidosis for all of this. But is that true?? I do not know. But I will get better and I will find my way back to work. Dang I really miss it. I loved fixing those cars and making my clients day.I wish you all health

and wellness. And I am sorry I have not been on-line much here. Please understand that what I am fighting at this time is more scary to me then any of the combat I was in amd I will need all of my strength to over come myself and get better.Greg aka Krumdawg"Slightly confused .... but who isn't these days?"

[Guest guest]

Yes Hang in there Greg, I too see the same signs in at times. I too blame the medicines she takes. Also her inability to work as she once did and the difficulties she has in doing everyday things. Things at times do get extremely bad and I have to try to hold on to the positive things in our life. I do have my faith and that is what seems to get us through. I too will continue to say extra prayers for everyone who is affected by this disease. Take care of yourself. Matt

From: Krumme <krumdawg (AT) tx (DOT) rr.com>Subject: UpdateTo: Neurosarcoidosis@ yahoogroups. comDate: Monday, February 15, 2010, 10:13 AM

Hello All I hope you are all doing well. Today will be hardest day for me. I have have and some others have notice signs of depression in me. I had the strength to admitt that I needed help. I even had the strength to find this help. Now the the tough part for me and my screwed up ego is today. Today I will actually begin the process of healing and getting better by accepting this help. Today I will see the Doctor and I am trying to steel myself to actually accept this help. I pray that I have the strength to actually complete this and get the help I need. Because I want to be here to see more of my daughters life and I want to make amends to the one ture love of my life. I blame the Prednisone and my condition of Nuerosarcoidosis for all of this. But is that true?? I do not know. But I will get better and I will find my way back to work. Dang I really miss it. I loved fixing those cars and making my clients day.I wish you all health

and wellness. And I am sorry I have not been on-line much here. Please understand that what I am fighting at this time is more scary to me then any of the combat I was in amd I will need all of my strength to over come myself and get better.Greg aka Krumdawg"Slightly confused .... but who isn't these days?"

[Guest guest]

Hi Greg,

You are in my prayers.

Alice

To: Neurosarcoidosis Sent: Mon, February 15, 2010 9:13:19 AMSubject: Update

Hello All I hope you are all doing well. Today will be hardest day for me. I have have and some others have notice signs of depression in me. I had the strength to admitt that I needed help. I even had the strength to find this help. Now the the tough part for me and my screwed up ego is today. Today I will actually begin the process of healing and getting better by accepting this help. Today I will see the Doctor and I am trying to steel myself to actually accept this help. I pray that I have the strength to actually complete this and get the help I need. Because I want to be here to see more of my daughters life and I want to make amends to the one ture love of my life. I blame the Prednisone and my condition of Nuerosarcoidosis for all of this. But is that true?? I do not know. But I will get better and I will find my way back to work. Dang I really miss it. I loved fixing those cars and making my clients day.I wish you all health

and wellness. And I am sorry I have not been on-line much here. Please understand that what I am fighting at this time is more scary to me then any of the combat I was in amd I will need all of my strength to over come myself and get better.Greg aka Krumdawg"Slightly confused .... but who isn't these days?"

[Guest guest]

Alyssa,"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."Yep, that would be the standard response. But I thought I was very careful not to say adrenal insufficiency. Fatigue and insufficiency are two different things to a doctor. They always assume we are talking about insufficiency when we ask about adrenals. To most doctors, you would have to be nearing the death bed before checking them. You could be just off enough to throw things out of kilter, but still be within their precious 'normal range' -- your body would be coping, but not very well. Every time I ask my doctor about my free T3 levels, she gives me the same kind of response that she would know by these two other things if I were having problems with T3--which is total bull. Your doctor would have to have done a 24 hour saliva adrenal test to know. Those could show normal at one or two points during the day, but out of range at the two other points (there are four

total). That would show you were struggling enough to affect the other hormones. An endocrinologist, unfortunately, usually is no better and most likely worse. So, she would rather slap you onto a possibly dangerous drug without even checking it out; force you into regular blood tests to make sure it isn't damaging your liver and/or suppressing your immune system too much. I am so frustrated on your behalf!!!!BTW, if you want (or your parents think it is worthwhile) you can have those tests done without your doctor requesting them. This information (and how to interpret the results) is in the book 'Stop the Thyroid Madness.'ZRT Laboratories: www.zrtlab.com Click on Consumer, then Saliva. Profile III (HPIII) will test all the sex hormones plus the four cortisol profiles. The Adrenal Funtion test is just for

your four cortisol times. Vitamin Research Products www.vrp.com offers test kits. Lastly is Genova Diagnostics www.gdx.net Look for their Adrenal Cortex Stress Profile for saliva testing.Hang in there! I hated it when Sanjay started the azathioprine too. Once it took effect, and it was Christmas time, he pretty much ate what he wanted. He found out soon enough, it didn't work that way. As far as we know, he has had no lasting complications and he isn't taking it anymore.AmeliaHusband UC 9 years, SCD 20 monthsLDN 3 mgTo: BTVC-SCD Sent: Wed, February 17, 2010 7:44:25 PMSubject: Update

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)

[Guest guest]

Hang in there! I hated it when Sanjay started the azathioprine too. Once it took effect, and it was Christmas time, he pretty much ate what he wanted. He found out soon enough, it didn't work that way. As far as we know, he has had no lasting complications and he isn't taking it anymore.Thanks Amelia =) I was sort of expecting that her response wouldn't satisfy you =) I'll email this to my rents and see what they say, and then maybe email my doctor what you said (though not criticizing her so much =) ) I really appreciate your input, especially if this could really help me. Peace =)Alyssa 15 yoUC April 2008, dx Sept 2008SCD June 2009 (restarted)

[Guest guest]

Let me clarify this a bit. There are various approaches to medicine- standard US

practice and the field of alternative medicine. In the US, most licensed

physicians would not consider the field of alternative medicine as an option,

certainly not Duke. Medical practice is tightly regulated.

Some practitioners will embrace an alternative view, such as chiropractors, and

Integrative Medicine physicians.

Traditional physicians do not consider " adrenal fatigue " , or the alternative

approaches to thyroid problems, or diet, or the like.

adrenal insufficiency is a serious illness. I believe former President JFK had

it.

All of us on this board embrace an alternative view to some extent, or we would

not be here. However, in the US at least, it is hard to find one practitioner

that will use both worlds. In some ways this is good. You want the person behind

the colonoscope to be fully licensed, regulated, and trained in traditional

medicine.

Duke is among the finest in the state of NC, the country, and the world for

state of the art medicine. We need this caliber of medicine. We may not be

entirely happy with what it has had to offer us in all aspects, and for that, we

look outside the box. I'm not arguing with your point of view, Amelia. I just

want Alyssa to understand the difference between traditional and alternative,

and why Duke would not be involved in alternative medicine. For traditional

medicine, she is in good hands.

PJ

>

> Alyssa,

>

> " 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. "

>

> Yep, that would be the standard response. But I thought I was very careful

not to say adrenal insufficiency. Fatigue and insufficiency are two different

things to a doctor. They always assume we are talking about insufficiency when

we ask about adrenals. To most doctors, you would have to be nearing the death

bed before checking them. You could be just off enough to throw things out of

kilter, but still be within their precious 'normal range' -- your body would be

coping, but not very well. Every time I ask my doctor about my free T3 levels,

she gives me the same kind of response that she would know by these two other

things if I were having problems with T3--which is total bull. Your doctor

would have to have done a 24 hour saliva adrenal test to know. Those could show

normal at one or two points during the day, but out of range at the two other

points (there are four total). That would show you were struggling enough to

affect the other

> hormones. An endocrinologist, unfortunately, usually is no better and most

likely worse.

>

> So, she would rather slap you onto a possibly dangerous drug without even

checking it out; force you into regular blood tests to make sure it isn't

damaging your liver and/or suppressing your immune system too much.

>

> I am so frustrated on your behalf!!!!

>

> BTW, if you want (or your parents think it is worthwhile) you can have those

tests done without your doctor requesting them. This information (and how to

interpret the results) is in the book 'Stop the Thyroid Madness.'

>

> ZRT Laboratories: www.zrtlab.com Click on Consumer, then Saliva. Profile

III (HPIII) will test all the sex hormones plus the four cortisol profiles. The

Adrenal Funtion test is just for your four cortisol times. Vitamin Research

Products www.vrp.com offers test kits. Lastly is Genova Diagnostics www.gdx.net

Look for their Adrenal Cortex Stress Profile for saliva testing.

>

> Hang in there! I hated it when Sanjay started the azathioprine too. Once it

took effect, and it was Christmas time, he pretty much ate what he wanted. He

found out soon enough, it didn't work that way. As far as we know, he has had

no lasting complications and he isn't taking it anymore.

>

> Amelia

> Husband UC 9 years, SCD 20 months

> LDN 3 mg

>

>

>

>

>

> ________________________________

>

> To: BTVC-SCD

> Sent: Wed, February 17, 2010 7:44:25 PM

> Subject: Update

>

>

> 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)

>

[Guest guest]

> Let me clarify this a bit. There are various approaches to medicine- > standard US practice and the field of alternative medicine. In the US, > most licensed physicians would not consider the field of alternative > medicine as an option, certainly not Duke. Medical practice is tightly > regulated.>> Some practitioners will embrace an alternative view, such as > chiropractors, and Integrative Medicine physicians.>> Traditional physicians do not consider "adrenal fatigue", or the > alternative approaches to thyroid problems, or diet, or the like.> adrenal insufficiency is a serious illness. I believe former President > JFK had it.>> All of us on this board embrace an alternative view to some extent, or > we would not be here. However, in the US at least, it is hard to find > one practitioner that will use both worlds. In some ways this is good. > You want the person behind the colonoscope to be fully licensed, > regulated, and trained in traditional medicine.>> Duke is among the finest in the state of NC, the country, and the world > for state of the art medicine. We need this caliber of medicine. We may > not be entirely happy with what it has had to offer us in all aspects, > and for that, we look outside the box. I'm not arguing with your point > of view, Amelia. I just want Alyssa to understand the difference between > traditional and alternative, and why Duke would not be involved in > alternative medicine. For traditional medicine, she is in good hands.>> PJThe reason most mainstream, conventionally trained doctors are the way they are is because almost all medical schools emphasize treating disease with drugs -- and they are are constantly bombarded with gift drugs from pharamceutical reps. Such doctors learn next to nothing about nutrition, about real preventative medicine, about phytobiological treatments (plant-based) or other non-drug approaches to healing. There should be no either/or in terms of alternative and conventional medicine. Would-be doctors should simply be learning that kind of stuff. Period.I just saw, this very day, the results of a study that evaluated dozens of other studies related to saturated fat and heart disease. Result: there's no evidence that saturated fat causes heart disease. Well, no kidding. Many good but unconventional authors, researchers, doctors who have really looked at the evidence before now could have told them that a long time ago, but they weren't listening. The whole low-fat bandwagon has gotten so out of control that a lot of conventional sources insist you shouldn't even eat egg yolks. (But meanwhile they've embraced sugar, and especially grains.) Conventional medicine is first and foremost excellent in a crisis, in accident/emergency situations that require surgery, reattaching limbs, removing organs, etc.. But for successfully treating systemic and chronic illness they simply aren't well equipped. And more patients have to stop assuming they are Iand start asking a whole lot more questions. Doctors aren't God, nor do they have the right to dictate treatment for/of any bodies but their own. I don't care how good a reputation Duke or Mayo Clinic or any other famous clinic or hospital has in conventional medicine. Unless they start changing their approach and hiring a lot more doctors who are trained in how the body uses nutrients (food, vitamins, minerals, amino acids, etc.), the effect of diet on the body, how to prescribe herbs -- and unless medical schools and drug companies and whoever else starts putting a lot more money into more study of those things, I wouldn't put any more trust in them than I would in any no-name clinic or hospital. There are some doctors who specialize in "complementary" medicine, and they're certainly steps in the right direction. Dr. Weil is one of them (though he, too, is on the avoid-saturated-fat-like-the-plague bandwagon). There are others like him, thankfully. (One of them is Dr. Ray Strand, who wrote What Your Doctor Doesn't Know About Nutritional Medicine May Be Killing You. Good book. He's a great bridge between conventional and alternative medical practitioners.)I spent the first 35 years of my life meekly doing everything my doctors told me. I sorely wish I hadn't, and that I had known then what I know now about foods and supplements. I'd be a lot healthier today.n   -- Now available. A fine gift for cat lovers:Confessions of a Cataholic: My Life With the 10 Cats Who Caused My Addictionby n Van Tilwww.wordpowerpublishing.com ; signed copies; free shipping in U.S., reduced shipping elsewhere

[Guest guest]

I'm sorry to hear that. I hope you feel better soon. You're in my thoughts.

To: BTVC-SCD Sent: Wed, February 17, 2010 2:44:25 PMSubject: Update

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 yoUC April 2008, dx Sept 2008SCD June 2009 (restarted)

[Guest guest]

Greg,

I have periods of time when I am depressed. I think it is the meds and/or the sarcoids. I try to not be along much when I am feeling this way. I go out and be around people if I am feeling up to it and try to keep my mind off of things that are negative like watch the news and etc. I often have periods where I feel paronoid as well. It comes all of a sudden and many time I have notice when I come off the prednisone I get this weird feeling that something bad is going to happen to me and afraid someone is going break in my place, I could fall and stab myself with a knife if I am using it in the kitchenand walking to put it somewhere. I just feel paranoid that something bad it going to happen so I just try to be really cautious.

These times as well as the depression times, I try to talk to friends, family, be around people not spend too much time alone. After a while it passes. I talk to my mom about it and she reassures me that yes it's the medicine usually. I do often get depressed as well when I think about things I may be missing out on or haven't accomplished because of the condition. All the added problems and stress from this condition makes you want to give up at times and stop fighting for life but I know I can't. The added weight and inconsiderate people don't make me feel any better but only I know what I have been though and not them. So keep looking up. Know that there are people worse than we are.

I go to the gym with a class full of old people (senior citzens) and people are always saying why are you in there with those old folks? I'm 32. lol I like being in there with them truthful. They make me feel appreciated and accepted. You can be yourself and talk to people with lots of experience and they make my day just seeing how even thought they are old they are still out there trying to make the most out of there life with all kinds of health problems on top of being old.

On of the men in my class told me the other day that he thought I was such a nice girl and helpful. He's partially blind in one eye and has suffered many strokes he told me and can barely walk but he's determine to do most of the things that the rest of us do. That made me feel good to know that he appreciated me taking the time to talk to him and help him in class.

I will end this cause it became much longer than I planned it but Greg I hope you feel back to your old self soon. And I hope my energy come back quickly!!!

[Guest guest]

I'm sorry you aren't doing better. Just a couple of thoughts and

nobody else has mentioned it, I don't think but have you mentioned the

LDN to your parents again before starting (is it 6MP?) or is that

completely off the table? (Is that what you refer to 'rents'--I'm

feeling old ;-).

And (I'm just throwing this out there), have you thought of making the

'iron' smoothies and straining all the fiber out and eliminating all

nut butters completely? Maybe go to lean cuts of meats, fish, soft

and tender foods, some liquids.

From reading your posts, you've probably done all that and then some.

Just thought I'd mention it.

And PJ is right, you are definitely in the best place for doctors,

hospitals, etc.

Debbie 40 houston cd

> I'm sorry to hear that.  I hope you feel better soon.  You're in

> my thoughts.

>

>

>

>

> ________________________________

>

> To: BTVC-SCD

> Sent: Wed, February 17, 2010 2:44:25 PM

> Subject: Update

>

>

> 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)

>

>

>

>

>

>

[Guest guest]

Alyssa, you amaze me! :)

Dawn

>

> > Just a couple of thoughts and

> > nobody else has mentioned it, I don't think but have you mentioned the

> > LDN to your parents again before starting (is it 6MP?) or is that

> > completely off the table? (Is that what you refer to 'rents'--I'm

> > feeling old ;-).

>

> Lol yeah, I was feeling lazy with my typing =) Yeah, it's pretty much

> off the table unless we find a doctor willing to prescribe it,

> unfortunately. They might be willing to try it without an rx if I was

> terribly sick and none of the meds were working. Or not. Who knows.

> It's really such a bummer it's not more widely prescribed, because

> what I would give to be on that instead of azathioprine!! ( I think I

> spelled it right that time =) )

>

> >

> > And (I'm just throwing this out there), have you thought of making the

> > 'iron' smoothies and straining all the fiber out and eliminating all

> > nut butters completely? Maybe go to lean cuts of meats, fish, soft

> > and tender foods, some liquids.

>

>

> Sort of. A while ago when I was flared up, I went for a few days

> without smoothies and didn't notice any difference, so I added them

> back. Same with nut butters. Although I limit myself to about a tbsp

> of pecan butter per day. I would just not eat it, but with school, its

> much less awkward to eat a pecan butter-souffle bread roll up during

> class than a thermos of steaming garlic chicken or something of the

> sort =)

>

> I really do appreciate your suggestions though. All of you. I think I

> would be pretty whacked out emotionally (or more so than I already am

> =) ) if I didn't have this group!

>

> Peace =)

> Alyssa 15 yo

> UC April 2008, dx Sept 2008

> SCD June 2009 (restarted)

>

[Guest guest]

In what way is the sodium/potassium unbalanced? Which one is higher/lower then

it should be with adrenal insufficiency?

Also Alyssa, did you doc mention using any non-big-gun meds, like Lialda,

Sulfasalzine, or Rowasa?

Holly

Crohn's

SCD 12/01/08

>

> 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)

>

[Guest guest]

You can read an in depth explanation about this sodium/potassium balance in Dr. 's book on Adrenal Fatigue. There's a hormone produced by the adrenals that is constantly working to keep this delicate balance. He recommends drinking salted water to help. People with adrenal fatigue have a problem with their internal water balance and drinking the salted water, especially when feeling fatigued, helps. I've read and re-read this chapter and have found that drinking the salted water does something. My body craves it. Anyway, this may be going off-topic. If you are curious about more details, send me an email and I'd be happy to share more info.

Darlene

To: BTVC-SCD Sent: Thu, February 18, 2010 1:29:44 PMSubject: Re: Re: Update

In what way is the sodium/potassium unbalanced? Which one is higher/lower then it should be with adrenal insufficiency?

I'm not sure, she didn't really specify. Generally when I go to doctors, they treat me like a kid since I'm still technically in pediatrics, and I don't get too many in-depth explanations unless I really dig for them. Instead I get asked if I need to go 'pee-pee' or if I'm still having 'loose poops.' =)

Also Alyssa, did you doc mention using any non-big-gun meds, like Lialda, Sulfasalzine, or Rowasa?

I asked her about that. She said that when inflammation goes on for so long uncontrolled it can be much harder to bring under control, and that she didn't think those would be strong enough for me.

Peace =)

Alyssa 15 yo

UC April 2008, dx Sept 2008

SCD June 2009 (restarted)

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