Re: Back in the Resort for me...

June 14, 2009

, GI is just as important as Cardio Pulmonary.? I sure hope your primary

team - whether it is Rheum or your PCP - gets them involved.? You just might

have so much inflammation that your lower GI cannot even absorb the meds that

you are taking.? I will think nothing but good thoughts for you.....and as much

as you want to go home, make them keep you until you are really ready.

Take good care,

Back in the Resort for me...

Hi guys... well - I've had a tough day....... and the ER Doc admitted me...

so Cardic test and probably GI stuff... who knows what will happen... I had

a feeling that I was let out too soon and I wanted to go home too....

So.... Tomorrow they will do some more cardio test, then I really don't know

what's next, but I'm trying to get them to get a GI doctor involved.

Take care everyone...

Alli

June 14, 2009

yes - I agree... I am educating all the docs on that. I spent a good 20

minutes with the resident cardio guy on that trying to get him to understand

that I don't believe I am absorbing any nutrients or producing any Potassium

At all. He is new, but very attentive and wanted to learn everything he

could about stills, so that was somewhat comforting.

I was a bit confused as to why I could hold solid food for a couple of days

and then lost it again, but I guess it makes sense, they pump you up, you

feel a bit better, and then the slippery slide starts again. Really a scary

feeling, especially when your Rheumy in Nashville denies seeing you and

tells you it's not a flare and then when you ask for help from a partner the

process is to get approval from the current dr and he denies that request.

UNREAL. What A GOD complex this guy has.

He's seen my so sick, and yet because he knows he screwed up royally he

won't help. Well if they can't figure it out they will pull in a local

Rhuemy - if that doesn't work, all the charts will be gathered and I'll be

sent to Vanderbilt.

So - One hour at a time, One day by a time.... With God right by my Side

Thanks for your support.

Alli

>

> , GI is just as important as Cardio Pulmonary.? I sure hope your

> primary team - whether it is Rheum or your PCP - gets them involved.? You

> just might have so much inflammation that your lower GI cannot even absorb

> the meds that you are taking.? I will think nothing but good thoughts for

> you.....and as much as you want to go home, make them keep you until you are

> really ready.

>

> Take good care,

>

> Back in the Resort for me...

>

> Hi guys... well - I've had a tough day....... and the ER Doc admitted me...

>

> so Cardic test and probably GI stuff... who knows what will happen... I had

>

> a feeling that I was let out too soon and I wanted to go home too....

>

> So.... Tomorrow they will do some more cardio test, then I really don't

> know

>

> what's next, but I'm trying to get them to get a GI doctor involved.

>

> Take care everyone...

>

> Alli

>

June 14, 2009

Alli - my daughter had eight teams working on her - Renal, GI, Rheum,

Neurology, Infectious Disease, Pain, Pulmonary, Cardiac - and a few others on

occasion.? There is a lot involved with inflammation and it can bring on a

secondary condition that cannot be handled by one Rheum.? Yes, yours does seem

to have a holy complex.

Keep your chin up!

Back in the Resort for me...

>

> Hi guys... well - I've had a tough day....... and the ER Doc admitted me...

>

> so Cardic test and probably GI stuff... who knows what will happen... I had

>

> a feeling that I was let out too soon and I wanted to go home too....

>

> So.... Tomorrow they will do some more cardio test, then I really don't

> know

>

> what's next, but I'm trying to get them to get a GI doctor involved.

>

> Take care everyone...

>

> Alli

>

June 14, 2009

Yes he does, and I'm glad he isn't working on me right now...

My doc from Seattle however sent advice to share with the team of docs, and

they are greatful for it. So different then the other doc that refuses

help.. huh? He thinks I may have a secondary problem with s Disease.

if you look it up it makes sense..

First rule out all heart isues, but since it seems I can't seem to produce

any potasium sodium, and since they have changed the potasium out after one

bag yesterday after my arm/neck got better, my arm is worse again... Hum..

interesting clue = nerve pain...

We'll see/

First echo-cardio gram. Next maybe cortisol/sodium test, etc and GI test...

Well see..

You don't have to have any tumor on your adrenal glands to have this problem

- you could on your pituatiary gland, but with auto-immune, usually not...

Usually your body can't produce cortisol, which then leads to a adreanal

storm along with the inflammation and boom.. all the stuff I've had

(including racing heart--- out of breath)

He said that just like this is rare, but stills patients need to be aware of

it, so - hence to post to everyone.... just in case you ever experience

it... so stilligans... look up s Disease -- I'm not saying that is

what is happening yet, I have no clue. I just know I'm not allowed to go

more than two steps to the broom, because my heart races when I do...

TOM-- You Want to Educated us on This one ????

signing out for a while

hugs to all - I was just woken up for more blood work....

Alli

>

> Alli - my daughter had eight teams working on her - Renal, GI, Rheum,

> Neurology, Infectious Disease, Pain, Pulmonary, Cardiac - and a few others

> on occasion.? There is a lot involved with inflammation and it can bring on

> a secondary condition that cannot be handled by one Rheum.? Yes, yours does

> seem to have a holy complex.

>

> Keep your chin up!

>

> Back in the Resort for me...

>

> >

>

> > Hi guys... well - I've had a tough day....... and the ER Doc admitted

> me...

>

> >

>

> > so Cardic test and probably GI stuff... who knows what will happen... I

> had

>

> >

>

> > a feeling that I was let out too soon and I wanted to go home too....

>

> >

>

> > So.... Tomorrow they will do some more cardio test, then I really don't

>

> > know

>

> >

>

> > what's next, but I'm trying to get them to get a GI doctor involved.

>

> >

>

> > Take care everyone...

>

> >

>

> > Alli

>

> >

>

> >

June 14, 2009

Alli,

Have you thought about having a port put in so the IV sites have a chance to

heal? Potassium is very hard on your veins, I got a port put in and it is one of

the best things I had ever done. And now since I am on chemo also, they just

hook me up and I get my Potassium, Iron and chemo through the port, no sticks

for IV's

Take care,

R.

________________________________

To: Stillsdisease

Sent: Sunday, June 14, 2009 5:18:45 AM

Subject: Re: Back in the Resort for me...

Yes he does, and I'm glad he isn't working on me right now...

My doc from Seattle however sent advice to share with the team of docs, and

they are greatful for it. So different then the other doc that refuses

help.. huh? He thinks I may have a secondary problem with s Disease.

if you look it up it makes sense..

First rule out all heart isues, but since it seems I can't seem to produce

any potasium sodium, and since they have changed the potasium out after one

bag yesterday after my arm/neck got better, my arm is worse again... Hum..

interesting clue = nerve pain....

We'll see/

First echo-cardio gram. Next maybe cortisol/sodium test, etc and GI test...

Well see..

You don't have to have any tumor on your adrenal glands to have this problem

- you could on your pituatiary gland, but with auto-immune, usually not...

Usually your body can't produce cortisol, which then leads to a adreanal

storm along with the inflammation and boom.. all the stuff I've had

(including racing heart--- out of breath)

He said that just like this is rare, but stills patients need to be aware of

it, so - hence to post to everyone.... just in case you ever experience

it... so stilligans.. . look up s Disease -- I'm not saying that is

what is happening yet, I have no clue. I just know I'm not allowed to go

more than two steps to the broom, because my heart races when I do...

TOM-- You Want to Educated us on This one ????

signing out for a while

hugs to all - I was just woken up for more blood work....

Alli

>

> Alli - my daughter had eight teams working on her - Renal, GI, Rheum,

> Neurology, Infectious Disease, Pain, Pulmonary, Cardiac - and a few others

> on occasion.? There is a lot involved with inflammation and it can bring on

> a secondary condition that cannot be handled by one Rheum.? Yes, yours does

> seem to have a holy complex.

>

> Keep your chin up!

>

> Back in the Resort for me...

>

> >

>

> > Hi guys... well - I've had a tough day....... and the ER Doc admitted

> me...

>

> >

>

> > so Cardic test and probably GI stuff... who knows what will happen... I

> had

>

> >

>

> > a feeling that I was let out too soon and I wanted to go home too....

>

> >

>

> > So.... Tomorrow they will do some more cardio test, then I really don't

>

> > know

>

> >

>

> > what's next, but I'm trying to get them to get a GI doctor involved.

>

> >

>

> > Take care everyone...

>

> >

>

> > Alli

>

> >

>

> >

June 14, 2009

,

I haven't gotten to that point yet, with the port... I sure hope I don't

have too. But we'll see what happens in the next week or so and go from

there. It isn't a bad idea, especially if I had to go through this all the

time. I think you have to go through much more than I do, and for that, I

am so, so sorry. Especially in regards to the Chemo.. Right now, it's more

of a one day at a time and find out what is happening first. I don't think

anyone has a clue yet... Once they have a better idea of what's happening...

then we can have that discussion, but it is a good idea if I have to do this

more often.

My heart just goes out for you so much - hang in there - OK?

Hugs and Love,

Alli

June 14, 2009

Alli,

All you can do is take one day at a time. I kinda look at it this way, you will

always have tomorrow, make the best of it.

Things are better on my front now that things are going smoothly and I have a

routine down. The routine helps as far as getting stressed or to tired. Just

have to listen what your body is telling you to do.

I will be thinking of you daily, get some rest, I know that is hard at the

resort, keep me posted. If you have any questions let me know, especially if you

need to take any of your meds in liquid form. I have a pharmacy that compounds

some of my meds and they gave me the instructions to mix some of them, and I

carry that list with me in case I end up in the resort.

Take care,

R.

________________________________

To: Stillsdisease

Sent: Sunday, June 14, 2009 6:15:31 AM

Subject: Re: Back in the Resort for me...

Recent Activity

* 2

New MembersVisit Your Group

Share Photos

Put your favorite

photos and

more online.

Group Charity

Food Bank

Feeding America

in tough times

Everyday Wellness

on Yahoo! Groups

Find groups that will

help you stay fit.

..

June 14, 2009

I'll be thinking of you...good luck!

April

June 14, 2009

Alli - I can only speak from experience with my daughter, but when she was

unable to absorb nutrients, she was on TPN and Lipids in the hospital - for 6

weeks at a time with no intake of food at all.? She then had clears for a long

time - she will never have jello every again!?? Then they started a gluten free

diet very slowly.? She had an upper and lower GI that showed immense

inflammation and explained a lot.

By the way, she can eat anything at this point, so........it was all a good

thing.

Again, take good care and make sure the docs do the same.......