Re: a Everyone- Questions About Angels and everything else....

[Guest guest]

, the poem was most interesting, and the idea about the angelic

mailman made me laugh. My daughter and I have a running joke about our

regular postal carrier reading all of our mail prior to delivery -

postcards, magazines, even items in once-sealed envelopes. has a

wonderful imagination.

Remicade, Enbrel, and getting off prednisone all sound like good ideas

to me. From what I've read, to be on the safe side, anyone contemplating

either Remicade or Enbrel should have a TB test before starting, so

that's a prudent move, too.

Now the high protein/low carb suggestion: I don't like it. Did your

rheumatologist have a theory for why you have the edema in the first

place? Isn't this edema relatively new for you? I saw you mention it a

couple of months ago, but has it only come about post the kidney stones

and lithotripsy (as opposed to a problem you have encountered before)?

What exact method of lithotripsy was performed? Who did it? Was the

urologist you will see on the 5th part of your lithotripsy team?

I would want a reasonable explanation for the edema before I would start

any sort of diet or medication for it.

I would definitely discuss the edema and the high protein diet with your

urologist. How about a consultation with a nephrologist, too?

Your work situation sounds like hell. I'm so sorry. That's so much

stress for you. In addition to the shortage of personnel, unfair and

secret distribution of bonus money, and threats to cut medical benefits,

your boss is not helping matters by making stupid references to his

sister and her relative good fortune. I think he should go on the next

mountain climbing expedition his sister undertakes. Maybe, if you're

lucky, he won't make it back.

[ ] a Everyone- " Questions About Angels " and

everything else....

> HI, , a, Debs, Tess, Al...everyone...

>

> , Sweetie, I knew if anyone could find anything like

> that on-line you could. I was kind of hinting when I

> dropped that title earlier today...and you picked up on

> it. Nice surprise when I got back from Doc's. I have a

> couple of his books of poetry. Don't you also love the

> mailman whistling up the driveway reading the post

> cards??

>

> Rheumatologist's visit went well and was way overdue.

> She is checking to see if my insurance will cover

> Remicade. She wants to wean me off pred ( I have been on

> 10-15 forever) and we think that might be the way to

> go.If not, we will look into Enbrel after the first of

> the year when she thinks it will once again be

> available. I am currently doing the mtx plaquenil and

> pred combo. Problem is I have had to be off mtx a couple

> of times - first with kidney stone recovery post

> lithotripsy and then the walking pneumonia. She also

> wants a tb test.

>

> She also wants me to try the protein power diet to

> control the edema I am experiencing. She figures I am

> carrying an extra 20 pounds in my legs-alone from just

> fluid...maybe 50lbs from fluid all told. No wonder I

> feel like a water balloon and nothing fits...shoes being

> a special problem. She won't give me diuretic to jump

> start....wants me to lose no more than 2lbs a week. I

> mentioned weight watchers points system...but she wants

> low carb high protein. Will give it a shot...maybe I

> will begin to feel a little better by say Thanksgiving

> or Christmas then.

>

> I am seeing the urologist on the 5th...may run edema

> issue by him too. I worry about the ketosis started by

> the high protein stuff. I am under enough stress without

> that too. The urine drop is to determine the type of

> stones I am prone too. Have had no new stones that I am

> aware of since end of February. Don't want too

> either....easily as bad as the worst flare. Trust me.

>

> Work has been miserable. I am so tired of always being

> behind. I have lost 5 staff since January...have only

> replaced one - and then with someone brand new- who is

> phenomenal but needs a lot of supervision time that I

> don't have but have to make time for. I spent easily

> half my day yesterday...in court or dep prep ....on

> someone else's cases and mine in the meanwhile keeps

> piling up...ARRGH. Morale is shot. Found out...through

> reasonably reliable source that Administrators got 4-

> 5,000 bonuses at Christmas when they are now laying my

> staff off. As managers we were told that there was no

> money for bonuses for our staff...but union found out

> otherwise...ARRGH. Now want to scale down medical

> insurance...heck that is the only reason some of us can

> afford to work there. I have been asking for voice

> activated software since February...told me to download

> a sample from a site to see if I like and whether it was

> worthwhile for me. ( Did I mention we do all of our own

> word processing and most of the data entry??) Tell me

> how do you do that without microphone and sound card on

> computer?? I have come very close to filing EEOC

> complaint...My boss keeps saying how his sister has RA

> and asthma but manages to mountain climb...Everest

> supposedly...and has lots of energy. Sorry enuf ...If I

> keep this up it will fill a digest by itself. If anyone

> wonders why I post so little this is why....I am not

> ignoring...and I am reading and silently supporting all

> of you.

>

> Hugs,

[Guest guest]

,

I'm with as far as my opinion on protein powder. High protein diets

cause dehydration, so yes it may help the edema. But high protein diets

can be dangerous for people with abnormal kidney function since excreting

the extra protein can be a burden on the kidneys. I¹m glad you¹re going to

a urologist and are going to run it by him. Maybe for a short time it may

help, but what's to say it won't come back. The long term risks of being on

a high protein diet may be something you want to consider.

My mom is going to weight watchers and is doing fabulously. I¹ve never seen

her looking so good. I like WW because they stress fish, fruits and veggies

with LITTLE meat. You can eat all the veggies you want with no points and

HAVE to eat 5 fruits a day. My worry about the low carb diets is that they

make people deficient in the B vitamins, which are essential for RA

patients. Carbs are also necessary to produce serotonin, and low serotonin

causes depression. RA patients are already suffering low levels of

serotonin! But most of all I worry about electrolyte imbalance in your body

and an acid buildup in the blood that can cause calcium to be leached from

your bones.

Sorry your job is so tough and hope it improves. Many places are scaling

back on insurances since the major hike in Blue Cross premiums. My

husband's employer was going to do the same thing, but they are allowing us

to choose which plan we want and we pay the difference between how much they

contribute.

Hope you're feeling better.

Hugs,

a

> HI, , a, Debs, Tess, Al...everyone...

>

> , Sweetie, I knew if anyone could find anything like

> that on-line you could. I was kind of hinting when I

> dropped that title earlier today...and you picked up on

> it. Nice surprise when I got back from Doc's. I have a

> couple of his books of poetry. Don't you also love the

> mailman whistling up the driveway reading the post

> cards??

>

> Rheumatologist's visit went well and was way overdue.

> She is checking to see if my insurance will cover

> Remicade. She wants to wean me off pred ( I have been on

> 10-15 forever) and we think that might be the way to

> go.If not, we will look into Enbrel after the first of

> the year when she thinks it will once again be

> available. I am currently doing the mtx plaquenil and

> pred combo. Problem is I have had to be off mtx a couple

> of times - first with kidney stone recovery post

> lithotripsy and then the walking pneumonia. She also

> wants a tb test.

>

> She also wants me to try the protein power diet to

> control the edema I am experiencing. She figures I am

> carrying an extra 20 pounds in my legs-alone from just

> fluid...maybe 50lbs from fluid all told. No wonder I

> feel like a water balloon and nothing fits...shoes being

> a special problem. She won't give me diuretic to jump

> start....wants me to lose no more than 2lbs a week. I

> mentioned weight watchers points system...but she wants

> low carb high protein. Will give it a shot...maybe I

> will begin to feel a little better by say Thanksgiving

> or Christmas then.

>

> I am seeing the urologist on the 5th...may run edema

> issue by him too. I worry about the ketosis started by

> the high protein stuff. I am under enough stress without

> that too. The urine drop is to determine the type of

> stones I am prone too. Have had no new stones that I am

> aware of since end of February. Don't want too

> either....easily as bad as the worst flare. Trust me.

>

> Work has been miserable. I am so tired of always being

> behind. I have lost 5 staff since January...have only

> replaced one - and then with someone brand new- who is

> phenomenal but needs a lot of supervision time that I

> don't have but have to make time for. I spent easily

> half my day yesterday...in court or dep prep ....on

> someone else's cases and mine in the meanwhile keeps

> piling up...ARRGH. Morale is shot. Found out...through

> reasonably reliable source that Administrators got 4-

> 5,000 bonuses at Christmas when they are now laying my

> staff off. As managers we were told that there was no

> money for bonuses for our staff...but union found out

> otherwise...ARRGH. Now want to scale down medical

> insurance...heck that is the only reason some of us can

> afford to work there. I have been asking for voice

> activated software since February...told me to download

> a sample from a site to see if I like and whether it was

> worthwhile for me. ( Did I mention we do all of our own

> word processing and most of the data entry??) Tell me

> how do you do that without microphone and sound card on

> computer?? I have come very close to filing EEOC

> complaint...My boss keeps saying how his sister has RA

> and asthma but manages to mountain climb...Everest

> supposedly...and has lots of energy. Sorry enuf ...If I

> keep this up it will fill a digest by itself. If anyone

> wonders why I post so little this is why....I am not

> ignoring...and I am reading and silently supporting all

> of you.

>

> Hugs,

>

>

[Guest guest]

, a, Stacey, Debs- everyone-thanks so much for

the support. The assumption is that the edema is caused

by the pred.I have been on pred way too long and

swelling comes and goes...has been a regular feature

since DVT and especially the hysterectomy. Despite

kidney stones...liver and kidney function is normal and

healthy - at least that is what the bloodwork says.

Same doc who did the lithotripsy is the one I see on the

5th...done by high powered laser/x-ray whatever- at

least treatment not done the old way in a water filled

tub. It was not a good experience. Anesthesia didn't

work very well and I was pretty much awake during the

whole thing. Anesthesiologist was a nice guy...but hard

to up anesthesia too much once things were started. I

had two very large stones...which were actually made

worse by the procedure. Doc came into recovery surprised

to find me awake. Stones were large enough that they

were achy but weren't moving much. He had originally

said I couldn't have litho- would have to do surgery

then changed his mind. After lithotripsy they were small

enough to move and pass....miserable. I was prepared to

go back in two days. I was off for almost a week -

couple of trips to the ER.I felt like I was in labor for

about a week. Passed the last and largest stone fragment

at work...sorry you probably didn't need that much

detail. (As an aside, Clancy and Riley, in particular,

really earned their kibble. They stayed very

close...Riley seemed to know when paid meds were not

working and would curl under my arms and against my

chest...as if to say...focus on me and you'll feel

better.)

I went to urologist originally for bladder incontinence

- which I had never had prior to the hysterectomy.

Solved one problem- created another. The stones were

sort of a surprise. I had had some back probs...but you

know how much we write off to " Arthur. " The latest in

the round of tests is just to determine what type of

diet to follow to avoid recurrences in the future. It

could be interesting balancing those dietary needs with

reflux issues and now the new protein wrinkle. I will

discuss the ketosis issues with Doc. The suggested diet

is not pure Atkinson...but close. I like weight watchers

too a...because it seems doable. Don't know how or

how well it impacts weight loss caused by fluid

retention.

Oh well, sorry about the length of this. Should know a

little more on the 5th...if problem occurs I will call

my primary who is pretty sensible and a good mediator.

Love and hugs,