(No subject)

[Guest guest]

Rene,

When I was on high doses of pred, my eyes hurt and I couldnt drive at

night because all the night lights had halos. The main problem was my sugar

level was over 500. High doses of pred raises your sugar level. Please have

your sugar checked and see a optimologist ASAP. Take care, Jim.

[Guest guest]

Rene,

I really believe the first and most important thing you need to do right now

is to calm yourself down. Stress is a major factor in any autoimmune disease

and you sound almost frantic which is not helping any of your problems at

all.

Now, do you have an eye doctor? He/she needs to know if you're having eye

pain. Pred is good at slowing down and sometimes putting RP in remission,

but it's far from the miracle cure we all need. Call your eye doctor and

tell him what you're experiencing.

As far as your sed rate, this test measures the inflammation in your body. I

don't believe it will distinguish between which disease is causing it. As

for the question on Lupus, I really don't know if it would make the RP worse

or not, maybe Angie can answer this, if it's answerable, but again, the main

thing is for you to calm down!!! You can cause a major flare just from

stressing over what might or might not be going on with your body.

We're all here for you Rene!!! Please remember that. I'm so worried about

you right now. Please write me privately if you need to talk about anything,

anything at all. We all love you and need you, so much in this group. Your

input is vital to help each and everyone of us understand more about this

disease.

Please take good care of yourself now. We need you girlfriend!!

>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>

From: RTI2264@...

Rene here

I was wondering if I'm on pred 40mgs why should I have pain in my eyes. I

don't understand. I truly thought that if you are on pred then the pain

should stop. If my doc takes me off of the pred. Does that mean that I will

have another flare? I'm going to ask about my Sed Rate.

If this is a SLE Flair. How will the doc's know which one it is and how

much

med I should be on. Another ?, can my lupus make my the RP flare, or can

the RP make my Lupus flare? I know they treat both of them the same,

however

the RP is much more dangerous in my book than the Lupus. If anyone can

answer these questions for me I would appreciate it a whole!!!!!!!! lot.

[Guest guest]

In a message dated 8/19/1999 8:39:01 PM Pacific Daylight Time,

WCTET42@... writes:

<< As long as you spell funk right. We are doing ok. : ) >>

Scared me for a second. LOL

No Name >>

Do you remember on Laugh-in. They used to say there were going to look it up

in thier Funk and wagnals. But the way they said it really made me wonder

what they were saying.

Roy

[Guest guest]

In a message dated 8/19/99 6:33:54 PM Central Daylight Time,

susuw@... writes:

<<

Lu,

This so called moderator has " spell check " on her computer and a Funk and

Wagnall (I had to go check and make sure I spelled Wagnall right!) beside

her computer desk. ME spell????????? ROTFLMAO!!!!!!!!!

>>>>>>>>>>>>>>>>>>

. >>

LOL Well, I don't even know what a moderator is ? LOL must less spell

anything? LOL

I have got to tell you what stupid thing I did today, of course I shouldn't

even tell it. I got up and dressed and went to town to run errands, came back

home and went into the bathroom and briefly looking in the mirror noticed I

had put my shirt on inside out today. LOL I kept wondering when I was in town

why everyone kept looking at me strange, lol suddenly I knew the answer. lol

Lu

[Guest guest]

In a message dated 8/19/99 10:43:03 PM Central Daylight Time, Rlr1999@...

writes:

<< Do you remember on Laugh-in. They used to say there were going to look it

up

in thier Funk and wagnals. But the way they said it really made me wonder

what they were saying.

Roy >>

No, I am too young to remember, what was in called ? Laugh- In ? LOL J/K

[Guest guest]

In a message dated 10/12/99 12:35:56 AM Central Daylight Time,

Idigflower@... writes:

<< Boy, I wonder what she

thinks of my voice LOL. >>

I loved your accent ....you have a beautiful voice......I got so excited

talking to you....Okay girls and guys we need to have that party....we would

have a blast, if our knees, ankles and feet will let us. : )

Lu

[Guest guest]

Hi ,

I never got the survey, and never really understood what the situation was.

Could you please summarize what your two approaches are? Are these each valid

approaches that we, as RSS parents, should consider? Or, or you suggesting that

there is something deceitful or disreputable going on?

If not, I'm open to hearing anything new!!

THanks,

Katy

[Guest guest]

Mark,

You are just too nice! How kind of you to be thinking of us today. As you

have probably read already, things went fairly well. It is just so hard to

wait for so long to see Dr. H. But the trip was productive and worth it.

And I feel less stressed now that the decision is made. Everything has

fallen into place, so I KNOW it is the right thing to do.

I am also glad to hear that is better. These kids do keep us on our

toes!

Jodi

[Guest guest]

Thank you, Mark.

Jodi

Re: (no subject)

> From: mdppdm@...

>

> Jodi,

> I'm glad for you and Max. It sound like you a good visit and thing, as

> you said, fallen into place.It makes it easier when it feels 'right'. As

> always my prayers to you all and I'll say a special prayer on Monday.

>

> Peace and Prayers

> Mark dad to 4 ( 5 in April), G-tube

>

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[Guest guest]

Jodi,

Boy, I can't believe the in-law problems. And even your Mom for that matter

forgetting about Max's surgery. My kids grandmothers at least do remember that

stuff. Well, get some rest and hopefully it will be a while before they return

again. Sometimes you have all you need to deal with at the moment and they

create undue stresses for yourself. Take care and thanks for the comments

regarding Dr. H. I can't wait to meet her myself.

Cheryl

z4all wrote:

>

>

> Cheryl, this is why I just love this support group. No matter what each of

> us is going through, someone else has been there, done that, and can help

> out in some way. Even if no one can really help, it brings some issues to

> the surface that I think we tend to ignore, bury, or not want to deal with

> alone. Your message did make me smile. I'm so glad I am not alone.

>

> BTW, my in-laws did come over. They sat in the living room with Max and me.

> They asked a few questions, gave Max a bag of organic cookies (?), and then

> we stared at each other. There was really nothing to say. Max wanted to

> sleep because I had given him more Tylenol 3, and I just wanted them to

> leave. They made a little bit of small talk, and then left. Whew! My own

> mother, on the other hand, forgot about the surgery. She is in Singapore

> with her husband, made me promise to get to her after the procedure, then

> forgot about us!! While my brother was here last night, we called her (it

> was 8am in Singapore), woke her up, and she did not even want to talk to me!

> She said hello to Max and was done with us. I wonder what our children will

> say about us when we are grandparents? I hope I am learning from these

> experiences.....

>

> I am glad you are going to see Dr. Harbison. She will be a tremendous help

> to you and . She is responsible for the quick scheduling of surgery

> for Max - and the surgeon she insisted on is just wonderful. Don't be

> surprised if she takes over with 's implant surgery. Rest assured,

> however, that she will watch every step and make sure he is okay.

>

> Jodi

> (no subject)

>

> >

> >

> > OK you guys you had to bring up the in-law stuff. We have major

> > problems with the in-laws and grandmothers in general. They are both

> > very helpful, but just don't seem to get it when it comes to all

> > 's problems. My Mom walks around telling people he can hear and

> > with some help he'll be big someday. Nope! She hopes for the best, and

> > believe me, I do too, but reality tells me different. She just can't

> > handle bad things. My mother-in-law on the other hand doesn't say a

> > darn thing. It's like, you know, we got some issues here wouldn't you

> > like to know more info about your grandson. Nope! I have no clue what

> > she's thinking. They both of course think they have all the answers in

> > raising triplets too, but that's a whole different story. Raising one

> > child at a time is different than multiples. They don't get that

> > either. So, needless to say, I have you guys for support for all the

> > RSS stuff, my triplets friends for triplet stuff, my support list for

> > g-tube stuff, and now a support group for hearing impaired stuff.

> > Anything else I should add? As always, thanks for listening. Talking

> > about in-laws, etc. hit home big time here.

> >

> > Cheryl

> >

> >

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[Guest guest]

At 07:47 AM 2/13/2008, you wrote:

Please, could you take me off your mailing list, I am leaving for Germany

shortly and don't know when I am returning.

Many Thanks!

Rosemarie,

Just go to your Yahoo Groups, and edit your membership to " read from

the web " , That way, you can catch up on what's been happening when

you return, and the emails don't fill up your box.

—

Marilyn

New Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund