Sandy

[Guest guest]

Sandy

You make it sound like a vehicle or something!LOL I am sorry I am laughing but when I first read this it sounded like fluid was leaking out of something besides your ankle! Oh I will go to my room! Sorry!!!

I am going to go look at this site to see what it shows. Gosh Sandy it had better start healing up or we are going to have to come over there with the pointy shoes, boobs, peanut butter, pain meds, depends, and my Eeyore jewelry! You hear me!!!

Love you

Glenda

,

Mine is not like your grandmothers, I have no fluid leaking out.

If you go to the Hopkins Vasculitis web site, they explain it very well. If you click on What is Vasculitis there is a picture of an ankle, that is what mine is like.

Love Ya,

Sandy

Sandy,

Is this where your foot is blistering up and clear water is running out of it?

Mike's grandmother has this so bad. Her legs get so swollen, sore, red and hot and then start oozing clear water.

You know how very special you are to me Sandy, I will keep praying for you as always.

W

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[Guest guest]

--- Sandy Catalusci wrote:

> Lu,

> I'm behind on my mail too. Can't seem to keep up.

> I have been doing better on the higher dose of

> Cytoxan.

> I'm almost afraid to get my hopes up but my

> Vasculitis has not flared in almost a week. I'm also

> having less flares from the RP.

> Are you having any luck finding a new Rheumy?

>

> Hugs,

> Sandy

Yeah, Sandy!! Hope this continues working for you.

That is such good news. Love, Sharon

>

>

> DISCLAIMER!!

> WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY

> INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE

> ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING

> ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE

> FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE.

> REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE

> DIFFERENT FOR MANY OF US. THANK YOU

>

>

[Guest guest]

--- Sandy Catalusci wrote:

> Lu,

> I'm behind on my mail too. Can't seem to keep up.

> I have been doing better on the higher dose of

> Cytoxan.

> I'm almost afraid to get my hopes up but my

> Vasculitis has not flared in almost a week. I'm also

> having less flares from the RP.

> Are you having any luck finding a new Rheumy?

>

> Hugs,

> Sandy

Yeah, Sandy!! Hope this continues working for you.

That is such good news. Love, Sharon

>

>

> DISCLAIMER!!

> WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY

> INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE

> ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING

> ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE

> FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE.

> REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE

> DIFFERENT FOR MANY OF US. THANK YOU

>

>

[Guest guest]

Sharon,

Thanks! I'm keeping my fingers crossed!

Sandy

Yeah, Sandy!! Hope this continues working for you. That is such good news. Love, Sharon> > > DISCLAIMER!!> WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY> INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE> ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING> ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE> FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE.> REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE> DIFFERENT FOR MANY OF US. THANK YOU > >

[Guest guest]

Sharon,

Thanks! I'm keeping my fingers crossed!

Sandy

Yeah, Sandy!! Hope this continues working for you. That is such good news. Love, Sharon> > > DISCLAIMER!!> WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY> INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE> ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING> ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE> FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE.> REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE> DIFFERENT FOR MANY OF US. THANK YOU > >

[Guest guest]

Sandy

I am doing great! Especially when my family is doing great!

Funny how that works for a wife and mother!LOL Really the RP is being good for me at the time being and I am not going to complain. Just the normal aches and pains of getting older is the only thing bothering me. They remind me every morning.

Shae sure thought the world of your girls. You are so lucky to have girls that sweet! Of course with a Mom like you what do I expect! She says Hi back to them!

Okay I am whispering now... How is the med doing? Still working okay for you? I sure hope so it is about time something started working for you!

Take care and know I think of you often!

Lots of Love

Glenda

Glenda,

So glad to hear Mike got a good report from the heart doc.

How have you been feeling?

Hope you are doing well.

Tell Shae the girls said hello.

Hugs,

Sandy

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[Guest guest]

Sandy

I am doing great! Especially when my family is doing great!

Funny how that works for a wife and mother!LOL Really the RP is being good for me at the time being and I am not going to complain. Just the normal aches and pains of getting older is the only thing bothering me. They remind me every morning.

Shae sure thought the world of your girls. You are so lucky to have girls that sweet! Of course with a Mom like you what do I expect! She says Hi back to them!

Okay I am whispering now... How is the med doing? Still working okay for you? I sure hope so it is about time something started working for you!

Take care and know I think of you often!

Lots of Love

Glenda

Glenda,

So glad to hear Mike got a good report from the heart doc.

How have you been feeling?

Hope you are doing well.

Tell Shae the girls said hello.

Hugs,

Sandy

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[Guest guest]

Thanks Liz...

You take care of yourself too. I pray that you will stay safe.

Love Ya,

Sandy

Sandy, so glad you are doing better with thevasculitis - keep working on the rp!! Take care ofyourself, and remember me to the girls. Love Liz__________________________________________________

[Guest guest]

Thanks Liz...

You take care of yourself too. I pray that you will stay safe.

Love Ya,

Sandy

Sandy, so glad you are doing better with thevasculitis - keep working on the rp!! Take care ofyourself, and remember me to the girls. Love Liz__________________________________________________

[Guest guest]

Thanks ... Keeping my fingers crossed too.

Sandy

Well, if the cytoxan is helping some of your diseases, maybe it will kick in and take care of that main one, RP!!! Keeping my fingers crossed for you my friend.

W

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

The Cytoxan seems to have put my Vasculitis into remission. YEAH!! It is also helping the Sjogrens but has had no effect on the RP yet.

SandyDISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

[Guest guest]

Thanks ... Keeping my fingers crossed too.

Sandy

Well, if the cytoxan is helping some of your diseases, maybe it will kick in and take care of that main one, RP!!! Keeping my fingers crossed for you my friend.

W

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

The Cytoxan seems to have put my Vasculitis into remission. YEAH!! It is also helping the Sjogrens but has had no effect on the RP yet.

SandyDISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

[Guest guest]

Sandy,

Glad to hear that the vaculitis is settled down but dog gone it anyway with the darn old RP. After seeing 4 Doctors next week you should will have been poked prodded and everything.

The blood sugar thing can stop right now. As if it is going to listen to me. I wish it was that easy.

Take care and know I think of you often and will be sending good thoughts and prayers your way!

Lots of Love

Glenda

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[Guest guest]

Sandy,

Glad to hear that the vaculitis is settled down but dog gone it anyway with the darn old RP. After seeing 4 Doctors next week you should will have been poked prodded and everything.

The blood sugar thing can stop right now. As if it is going to listen to me. I wish it was that easy.

Take care and know I think of you often and will be sending good thoughts and prayers your way!

Lots of Love

Glenda

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[Guest guest]

Sandy,

I am glad you are doing better. You just have to keep going in the right direction that is for sure. I am just so happy that you are able to go down on the pred.

Now for me the eye drops so far they are not working. I woke up again this morning with eyes matted again. I will call the Dr. today again to see how long it is to take for them to work.

Take care and know I think of you often!

Lots of Love

Glenda

Glenda,

I will let you know and thank you for your prayers.

My Rheumy had me go down on the Pred. to 25 mg.

I'm still flaring but not as often, I am back on the Motrin to try and help the flares. I don't want to up my Pred., I want to get off of it. I am thrilled that I don't have to deal with the vasculitis. The pain from that is horrible.

Are your eye drops helping at all? My grandson always gets eye infections when he gets a cold, that is probably why your doctor asked you if you had a cold.

Hugs,

Sandy

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[Guest guest]

Sandy,

I am glad you are doing better. You just have to keep going in the right direction that is for sure. I am just so happy that you are able to go down on the pred.

Now for me the eye drops so far they are not working. I woke up again this morning with eyes matted again. I will call the Dr. today again to see how long it is to take for them to work.

Take care and know I think of you often!

Lots of Love

Glenda

Glenda,

I will let you know and thank you for your prayers.

My Rheumy had me go down on the Pred. to 25 mg.

I'm still flaring but not as often, I am back on the Motrin to try and help the flares. I don't want to up my Pred., I want to get off of it. I am thrilled that I don't have to deal with the vasculitis. The pain from that is horrible.

Are your eye drops helping at all? My grandson always gets eye infections when he gets a cold, that is probably why your doctor asked you if you had a cold.

Hugs,

Sandy

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[Guest guest]

Sandy,

It may not have been the news that she wanted to hear but at least it is not any bigger and she is doing okay! Will still keep you all in my prayers. Tell and I am thinking of them.

Lots of Love

Glenda

I spent the day at the Cleveland Clinic with today. She had her MRI and met with her Cancer Doctors.

The tumor is still the same size. was very disappointed.

She asked her Oncologist what the prognosis is, she thought the tumor would continue to shrink. He told her the

purpose of the intense radiation treatments was to slow down the growth, it will not go away. She will continue to have MRI's done every 4 months to monitor the tumor. He told her if the tumor gets to large they can do surgery to take the pressure off the brain.

Wish I had better news.

I'm off to the Cleveland Clinic again tomorrow. will be seeing the Endocrinologist concerning her thyroid.

Sandy

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[Guest guest]

Sandy,

It may not have been the news that she wanted to hear but at least it is not any bigger and she is doing okay! Will still keep you all in my prayers. Tell and I am thinking of them.

Lots of Love

Glenda

I spent the day at the Cleveland Clinic with today. She had her MRI and met with her Cancer Doctors.

The tumor is still the same size. was very disappointed.

She asked her Oncologist what the prognosis is, she thought the tumor would continue to shrink. He told her the

purpose of the intense radiation treatments was to slow down the growth, it will not go away. She will continue to have MRI's done every 4 months to monitor the tumor. He told her if the tumor gets to large they can do surgery to take the pressure off the brain.

Wish I had better news.

I'm off to the Cleveland Clinic again tomorrow. will be seeing the Endocrinologist concerning her thyroid.

Sandy

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[Guest guest]

Glenda,

I will let them know. We have not given up hope. There is still a chance the tumor won't grow.

Love Ya,

Sandy

----- Original Message -----

Sandy,

It may not have been the news that she wanted to hear but at least it is not any bigger and she is doing okay! Will still keep you all in my prayers. Tell and I am thinking of them.

Lots of Love

Glenda

I spent the day at the Cleveland Clinic with today. She had her MRI and met with her Cancer Doctors.

The tumor is still the same size. was very disappointed.

She asked her Oncologist what the prognosis is, she thought the tumor would continue to shrink. He told her the

purpose of the intense radiation treatments was to slow down the growth, it will not go away. She will continue to have MRI's done every 4 months to monitor the tumor. He told her if the tumor gets to large they can do surgery to take the pressure off the brain.

Wish I had better news.

I'm off to the Cleveland Clinic again tomorrow. will be seeing the Endocrinologist concerning her thyroid.

Sandy

---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.295 / Virus Database: 159 - Release Date: 11/1/2001DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

[Guest guest]

Glenda,

I will let them know. We have not given up hope. There is still a chance the tumor won't grow.

Love Ya,

Sandy

----- Original Message -----

Sandy,

It may not have been the news that she wanted to hear but at least it is not any bigger and she is doing okay! Will still keep you all in my prayers. Tell and I am thinking of them.

Lots of Love

Glenda

I spent the day at the Cleveland Clinic with today. She had her MRI and met with her Cancer Doctors.

The tumor is still the same size. was very disappointed.

She asked her Oncologist what the prognosis is, she thought the tumor would continue to shrink. He told her the

purpose of the intense radiation treatments was to slow down the growth, it will not go away. She will continue to have MRI's done every 4 months to monitor the tumor. He told her if the tumor gets to large they can do surgery to take the pressure off the brain.

Wish I had better news.

I'm off to the Cleveland Clinic again tomorrow. will be seeing the Endocrinologist concerning her thyroid.

Sandy

---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.295 / Virus Database: 159 - Release Date: 11/1/2001DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

[Guest guest]

Marilyn,

Thank you. She is very brave, She never gives up hope

Her spiritual strength is amazing.

Love,

Sandy

Wish the news at the clinic had been better for Valarie,I will keep praying hard for her. She is a very brave young lady andhas been through a lot. Please tell her she is in my thoughts as is all of your family. Love, Marilyn K.DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

[Guest guest]

Marilyn,

Thank you. She is very brave, She never gives up hope

Her spiritual strength is amazing.

Love,

Sandy

Wish the news at the clinic had been better for Valarie,I will keep praying hard for her. She is a very brave young lady andhas been through a lot. Please tell her she is in my thoughts as is all of your family. Love, Marilyn K.DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

[Guest guest]

Lu

Thanks I was wondering about Sandy too. No I haven't heard a word from her. At least I know I am not the only worry wart!LOL

Lots of Love

Glenda

[Guest guest]

Lu

Thanks I was wondering about Sandy too. No I haven't heard a word from her. At least I know I am not the only worry wart!LOL

Lots of Love

Glenda

[Guest guest]

Thanks , I've really had a hard time dealing with her being gone, but I

just try to find ways to deal with it. I'll know something in the next week or

so on my bloodwork, and even though my dr seems to think me getting off the meds

if the bloodwork says things are normal, I'm still a little apprehensive.

I guess when the other dr I'd gone to took me off and on meds and only looked at

the TSH, it just kind of made me leary of just going off meds cold turkey. I

did tell my dr that I'd much rather try 2.5 mgs for a while and see how that

goes, instead of just dropping 5 mgs at this point. I know I'm not hypo because

I'm actually losing weight, but those #'s will tell a tale I'm sure. I'm just

not in a hurry to upset the apple cart as long as things are going so well.

Been there, dont that, not anxious to just jump to conclusions. :-)

SandyE~Houston

Sandy

Hi Sandy,

I'm so happy you're feeling better -- wonderful for you and it's

encouraging to hear good news!

But I'm very sorry to learn that your bird hasn't turned up yet -- I'd

been wondering. I know how sad it is to lose a beloved pet.

Anyway, hang in there! Good news/bad news seems like the norm

sometimes, eh?

Take care,

p.s. I think you may have tried to send me a message a few days ago,

but the post was empty.

> Since I've not really spoken to my Endo about the fact that if I

ever needed thyroid drugs instead of ATD's, what he'd suggest for me

to take. I told him it was the 100.00 question, and he said you could

have one of any thyroid drugs if you ever needed it. So I put him on

the spot and made him tell me what he'd prescribe. He told me he has

people who insist on Armour, and he gives it to them! I was

impressed! Told him he answered correctly! lol

>

> I've lost a little over 20 lbs, and his scales verified that today!

Yippie! I did tell him that I'd not been eating as much as I'd lost

my appetite over losing my bird, Gabby, and had been too busy combing

the neighborhood putting up flyers, and walking and whistling for her.

He said that this blood work would tell him what he needed to know,

and then he asked me: How would I feel about maybe stopping the ATD's,

and see how it went. I very quickly replied that If he'd test my TSI,

to see how the antibodies were doing, that I'd consider it. But, that

if the antibodies were still running amuck, nope, I'd just stick with

a 2.5 mg dosage and we'd see how well this goes.

>

> It's been August since I've had bloodwork done, but I do feel better

now than I have in a long long time. I'm almost feeling as if I'm

back to normal, but I'll still have to stay on Atenolol even if I can

stop the ATD's cuz of my blood pressure. But, we'll have to see how

the test results go.

>

> Well, I have to go pick up some dog food, and something to eat so I

have to get a move on. It's much later than I thought it would be!

>

> Later

> Sandy~Houston

>

>

> [Non-text portions of this me

[Guest guest]

Hi Sandy,

I think you've got it right about taking it slow -- at least that sure

seems to be the consensus here.

Good luck -- I'm rooting for you!

-

> Thanks , I've really had a hard time dealing with her being

gone, but I just try to find ways to deal with it. I'll know

something in the next week or so on my bloodwork, and even though my

dr seems to think me getting off the meds if the bloodwork says things

are normal, I'm still a little apprehensive.

>

> I guess when the other dr I'd gone to took me off and on meds and

only looked at the TSH, it just kind of made me leary of just going

off meds cold turkey. I did tell my dr that I'd much rather try 2.5

mgs for a while and see how that goes, instead of just dropping 5 mgs

at this point. I know I'm not hypo because I'm actually losing

weight, but those #'s will tell a tale I'm sure. I'm just not in a

hurry to upset the apple cart as long as things are going so well.

Been there, dont that, not anxious to just jump to conclusions. :-)

>

> Sa