Sandy

March 19, 2001

B.,

I missed your emails due to computer trouble. For some reason my computer

was bouncing some of my mail.

First off, I have to say congratulations " Grandma " . I'm so happy for you and

your family.

I am still with the Clinic but I see Dr. MacIntyre. He's great!

Once I started on the Cyclosporine that got the Vascullitis under control.

Good luck with your Colonoscopy. I will pray for you that all goes well.

And thank you so much for all your prayers for . And you are right,

God certainly is good. There are many people praying for and it

gives her great comfort.

Love Ya,

Sandy

> Hi Sandy,

> I have sent you E_mails about your daughter and thought you got them or

> perhaps missed them with all your troubles. I have prayer for you all and

> had my bible study pray as well. I couldn't believe it when I read about

> Valorie. My heart goes out to all your family and especially her. I am so

> thankful that God gave her a mother like you. I know you must be wonderful

> with her. I pray for strength for you too.

>

> Yes, I am still with the clinic and alternative medicine. I have been

doing

> real well with just occasional flares . My ear is flaring now and I cannot

> take anything until Friday as I need to have a colonoscopy Friday as I

have

> precancerous polys.

>

> Sorry to hear you have Vasculitis. I always worry about that. Is yours

under

> control? I was surpirsed to have had flares in my nose without pain this

> winter but the doc discovered it when I last went for my check-up. Why did

> you leave Dr. Hoffman?

>

> My daughter-in-law and son had their baby girl two months ago and she is

> such a joy. They are so thrilled to be parents after such a long ordeal.

God

> is good! They named her after me which made me cry for a week! I am so in

> love with her!

> Take care Sandy and know that I will pray for you and your family as I

close

> this note.

> Love,

> B

>

> Re: - Migraines???

> > >

> > > > ,

> > > > I don't know what aucular migraines are but I get

> > > > migraines now that I have RP. Never had any kind of a

> > > > headache before the RP. I think that there is a

> > > > connection but know what type. All I know is that I

> > > > hate them. Luckily I don't get them very often just

> > > > once in a great while. It would be interesting to see

> > > > what these might have to do with RP. Maybe the

> > > > meds???

> > > > Lots of Love

> > > > Glenda

> > > >

> > > > > Judy, I too have ocular migraines. It is scarey to

> > > > > drive because you never

> > > > > know when they will hit. I told Lu, I was driving

> > > > > back from my rheumy visit

> > > > > when the last one hit. Had to get off the freeway

> > > > > really fast. I knew it

> > > > > was coming. Well, I ended up in a bookstore. LOL

> > > > > Great place to be when you

> > > > > can't see. LOL Spent 3 hours there, just sitting...

> > > > > Couldn't even read a

> > > > > title. Should have just went to the nearest candy

> > > > > store and ate chocolate

> > > > > for three hours. Don't need to see to do that. LOL

> > > > > I think there are more

> > > > > in the group who have them too. Is there any

> > > > > connection to them and RP.

> > > > > Maybe we should ask Cath. Has anyone heard from her

> > > > > lately.??? Miss her.

> > > > >

> > > > > HUgs

> > > > >

> > > >

> > > > __________________________________________________

> > > >

March 19, 2001

B, Congratulations on your new grandaughter! How proud you must be

and honored to have a namesake. I was named after my grandmother too.

So good to have you posting again. I will keep you in my prayers for Friday.

I'm sure everything will be okay. My husband just had polyps removed and

everything went smoothly.

Did I understand you right, You had a nose flare with no pain.? How did

they find it? I have been having more problems with my nose now then ever

before. Just curious.

Sending lots of hugs and prayers

C

March 19, 2001

B, Congratulations on your new grandaughter! How proud you must be

and honored to have a namesake. I was named after my grandmother too.

So good to have you posting again. I will keep you in my prayers for Friday.

I'm sure everything will be okay. My husband just had polyps removed and

everything went smoothly.

Did I understand you right, You had a nose flare with no pain.? How did

they find it? I have been having more problems with my nose now then ever

before. Just curious.

Sending lots of hugs and prayers

C

March 20, 2001

Sandy,

They found my flare when I complained of difficulty breathing at night and

said I was taking Afrin to help. They, Dr. Hoffman and Dr Mehta both looked

up my nose and said I was flaring on both side of the septum. I didn't know

that could happen without pain. Did you ever have that happen without pain?

Maybe we do't have nerves in certqain areas there. I will ask the docs about

that next time.Are you still seeing Dr. Hoffman?

B

Re: Sandy

> B, Congratulations on your new grandaughter! How proud you must

be

> and honored to have a namesake. I was named after my grandmother too.

>

> So good to have you posting again. I will keep you in my prayers for

Friday.

> I'm sure everything will be okay. My husband just had polyps removed and

> everything went smoothly.

>

> Did I understand you right, You had a nose flare with no pain.? How did

> they find it? I have been having more problems with my nose now then ever

> before. Just curious.

>

> Sending lots of hugs and prayers

> C

>

> 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

>

March 20, 2001

Sandy,

They found my flare when I complained of difficulty breathing at night and

said I was taking Afrin to help. They, Dr. Hoffman and Dr Mehta both looked

up my nose and said I was flaring on both side of the septum. I didn't know

that could happen without pain. Did you ever have that happen without pain?

Maybe we do't have nerves in certqain areas there. I will ask the docs about

that next time.Are you still seeing Dr. Hoffman?

B

Re: Sandy

> B, Congratulations on your new grandaughter! How proud you must

be

> and honored to have a namesake. I was named after my grandmother too.

>

> So good to have you posting again. I will keep you in my prayers for

Friday.

> I'm sure everything will be okay. My husband just had polyps removed and

> everything went smoothly.

>

> Did I understand you right, You had a nose flare with no pain.? How did

> they find it? I have been having more problems with my nose now then ever

> before. Just curious.

>

> Sending lots of hugs and prayers

> C

>

> 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

>

March 20, 2001

Sandy, Why are you not seeing Dr. Hoffman anymore?I still go to him and

hopethat's the right thing to do.

Re: - Migraines???

> > > >

> > > > > ,

> > > > > I don't know what aucular migraines are but I get

> > > > > migraines now that I have RP. Never had any kind of a

> > > > > headache before the RP. I think that there is a

> > > > > connection but know what type. All I know is that I

> > > > > hate them. Luckily I don't get them very often just

> > > > > once in a great while. It would be interesting to see

> > > > > what these might have to do with RP. Maybe the

> > > > > meds???

> > > > > Lots of Love

> > > > > Glenda

> > > > >

> > > > > > Judy, I too have ocular migraines. It is scarey to

> > > > > > drive because you never

> > > > > > know when they will hit. I told Lu, I was driving

> > > > > > back from my rheumy visit

> > > > > > when the last one hit. Had to get off the freeway

> > > > > > really fast. I knew it

> > > > > > was coming. Well, I ended up in a bookstore. LOL

> > > > > > Great place to be when you

> > > > > > can't see. LOL Spent 3 hours there, just sitting...

> > > > > > Couldn't even read a

> > > > > > title. Should have just went to the nearest candy

> > > > > > store and ate chocolate

> > > > > > for three hours. Don't need to see to do that. LOL

> > > > > > I think there are more

> > > > > > in the group who have them too. Is there any

> > > > > > connection to them and RP.

> > > > > > Maybe we should ask Cath. Has anyone heard from her

> > > > > > lately.??? Miss her.

> > > > > >

> > > > > > HUgs

> > > > > >

> > > > >

> > > > > __________________________________________________

> > > > >

March 20, 2001

B,

I have not seen Dr Hoffman. I was going to make an appointment with him but

found out about Dr. MacIntyre at Cleveland Clinic

Westlake. He is a good Rheumy and I do not have to travel so far.

I can't drive much anymore so I have to rely on my husband to

get me to my appointments. I have heard that Dr. Hoffman is an

excellent doctor. He is a specialist in Vascullitis. I believe he heads that

department.

Love,

Sandy

> Sandy, Why are you not seeing Dr. Hoffman anymore?I still go to him and

> hopethat's the right thing to do.

>

> Re: - Migraines???

> > > > >

> > > > > > ,

> > > > > > I don't know what aucular migraines are but I get

> > > > > > migraines now that I have RP. Never had any kind of a

> > > > > > headache before the RP. I think that there is a

> > > > > > connection but know what type. All I know is that I

> > > > > > hate them. Luckily I don't get them very often just

> > > > > > once in a great while. It would be interesting to see

> > > > > > what these might have to do with RP. Maybe the

> > > > > > meds???

> > > > > > Lots of Love

> > > > > > Glenda

> > > > > >

> > > > > > > Judy, I too have ocular migraines. It is scarey to

> > > > > > > drive because you never

> > > > > > > know when they will hit. I told Lu, I was driving

> > > > > > > back from my rheumy visit

> > > > > > > when the last one hit. Had to get off the freeway

> > > > > > > really fast. I knew it

> > > > > > > was coming. Well, I ended up in a bookstore. LOL

> > > > > > > Great place to be when you

> > > > > > > can't see. LOL Spent 3 hours there, just sitting...

> > > > > > > Couldn't even read a

> > > > > > > title. Should have just went to the nearest candy

> > > > > > > store and ate chocolate

> > > > > > > for three hours. Don't need to see to do that. LOL

> > > > > > > I think there are more

> > > > > > > in the group who have them too. Is there any

> > > > > > > connection to them and RP.

> > > > > > > Maybe we should ask Cath. Has anyone heard from her

> > > > > > > lately.??? Miss her.

> > > > > > >

> > > > > > > HUgs

> > > > > > >

> > > > > >

> > > > > > __________________________________________________

> > > > > >

March 21, 2001

Thanks Sandy. I really like Dr. Hoffman andam so glad not to receive a bad

report on him. I am glad you like your new doc. Hope Valorie is doing well.

Love,

Re: - Migraines???

> > > > > >

> > > > > > > ,

> > > > > > > I don't know what aucular migraines are but I get

> > > > > > > migraines now that I have RP. Never had any kind of a

> > > > > > > headache before the RP. I think that there is a

> > > > > > > connection but know what type. All I know is that I

> > > > > > > hate them. Luckily I don't get them very often just

> > > > > > > once in a great while. It would be interesting to see

> > > > > > > what these might have to do with RP. Maybe the

> > > > > > > meds???

> > > > > > > Lots of Love

> > > > > > > Glenda

> > > > > > >

> > > > > > > > Judy, I too have ocular migraines. It is scarey to

> > > > > > > > drive because you never

> > > > > > > > know when they will hit. I told Lu, I was driving

> > > > > > > > back from my rheumy visit

> > > > > > > > when the last one hit. Had to get off the freeway

> > > > > > > > really fast. I knew it

> > > > > > > > was coming. Well, I ended up in a bookstore. LOL

> > > > > > > > Great place to be when you

> > > > > > > > can't see. LOL Spent 3 hours there, just sitting...

> > > > > > > > Couldn't even read a

> > > > > > > > title. Should have just went to the nearest candy

> > > > > > > > store and ate chocolate

> > > > > > > > for three hours. Don't need to see to do that. LOL

> > > > > > > > I think there are more

> > > > > > > > in the group who have them too. Is there any

> > > > > > > > connection to them and RP.

> > > > > > > > Maybe we should ask Cath. Has anyone heard from her

> > > > > > > > lately.??? Miss her.

> > > > > > > >

> > > > > > > > HUgs

> > > > > > > >

> > > > > > >

> > > > > > > __________________________________________________

> > > > > > >

March 21, 2001

Thanks Sandy. I really like Dr. Hoffman andam so glad not to receive a bad

report on him. I am glad you like your new doc. Hope Valorie is doing well.

Love,

Re: - Migraines???

> > > > > >

> > > > > > > ,

> > > > > > > I don't know what aucular migraines are but I get

> > > > > > > migraines now that I have RP. Never had any kind of a

> > > > > > > headache before the RP. I think that there is a

> > > > > > > connection but know what type. All I know is that I

> > > > > > > hate them. Luckily I don't get them very often just

> > > > > > > once in a great while. It would be interesting to see

> > > > > > > what these might have to do with RP. Maybe the

> > > > > > > meds???

> > > > > > > Lots of Love

> > > > > > > Glenda

> > > > > > >

> > > > > > > > Judy, I too have ocular migraines. It is scarey to

> > > > > > > > drive because you never

> > > > > > > > know when they will hit. I told Lu, I was driving

> > > > > > > > back from my rheumy visit

> > > > > > > > when the last one hit. Had to get off the freeway

> > > > > > > > really fast. I knew it

> > > > > > > > was coming. Well, I ended up in a bookstore. LOL

> > > > > > > > Great place to be when you

> > > > > > > > can't see. LOL Spent 3 hours there, just sitting...

> > > > > > > > Couldn't even read a

> > > > > > > > title. Should have just went to the nearest candy

> > > > > > > > store and ate chocolate

> > > > > > > > for three hours. Don't need to see to do that. LOL

> > > > > > > > I think there are more

> > > > > > > > in the group who have them too. Is there any

> > > > > > > > connection to them and RP.

> > > > > > > > Maybe we should ask Cath. Has anyone heard from her

> > > > > > > > lately.??? Miss her.

> > > > > > > >

> > > > > > > > HUgs

> > > > > > > >

> > > > > > >

> > > > > > > __________________________________________________

> > > > > > >

March 21, 2001

Thanks Sandy. I really like Dr. Hoffman andam so glad not to receive a bad

report on him. I am glad you like your new doc. Hope Valorie is doing well.

Love,

Re: - Migraines???

> > > > > >

> > > > > > > ,

> > > > > > > I don't know what aucular migraines are but I get

> > > > > > > migraines now that I have RP. Never had any kind of a

> > > > > > > headache before the RP. I think that there is a

> > > > > > > connection but know what type. All I know is that I

> > > > > > > hate them. Luckily I don't get them very often just

> > > > > > > once in a great while. It would be interesting to see

> > > > > > > what these might have to do with RP. Maybe the

> > > > > > > meds???

> > > > > > > Lots of Love

> > > > > > > Glenda

> > > > > > >

> > > > > > > > Judy, I too have ocular migraines. It is scarey to

> > > > > > > > drive because you never

> > > > > > > > know when they will hit. I told Lu, I was driving

> > > > > > > > back from my rheumy visit

> > > > > > > > when the last one hit. Had to get off the freeway

> > > > > > > > really fast. I knew it

> > > > > > > > was coming. Well, I ended up in a bookstore. LOL

> > > > > > > > Great place to be when you

> > > > > > > > can't see. LOL Spent 3 hours there, just sitting...

> > > > > > > > Couldn't even read a

> > > > > > > > title. Should have just went to the nearest candy

> > > > > > > > store and ate chocolate

> > > > > > > > for three hours. Don't need to see to do that. LOL

> > > > > > > > I think there are more

> > > > > > > > in the group who have them too. Is there any

> > > > > > > > connection to them and RP.

> > > > > > > > Maybe we should ask Cath. Has anyone heard from her

> > > > > > > > lately.??? Miss her.

> > > > > > > >

> > > > > > > > HUgs

> > > > > > > >

> > > > > > >

> > > > > > > __________________________________________________

> > > > > > >

March 24, 2001

,

If you sent it to my email addy I did not get it.

I have also sent you many emails but not sure if you got them.

B. sent me emails also that I never got.

Sandy

> Hi Sandy,

> I sent you an email, let me know if you receive it OK? I guess my emails

> aren't going through to you because I've written several times.

> I'm sorry about that. Let me know if you receive the one I just sent you,

> OK?

> W

> BTW- sorry group. This was the only way that I knew of to make sure Sandy

> got my post.

>

> 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

>

March 24, 2001

,

If you sent it to my email addy I did not get it.

I have also sent you many emails but not sure if you got them.

B. sent me emails also that I never got.

Sandy

> Hi Sandy,

> I sent you an email, let me know if you receive it OK? I guess my emails

> aren't going through to you because I've written several times.

> I'm sorry about that. Let me know if you receive the one I just sent you,

> OK?

> W

> BTW- sorry group. This was the only way that I knew of to make sure Sandy

> got my post.

>

> 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

>

March 24, 2001

Thanks Marilyn, I know from past experience that every time I go down on the

Pred. I get real bad. Everytime I got down to 20mg. I ended up in the

hospital with breathing problems.

I know what you mean about the vasculitis, my left foot has scars all over

it.

Love Ya,

Sandy

> When I flare up I have to go to 30 mgs a day. Then I have to do the

> taper down thing every 5 days till I get to the point where my flare

> settles, sort of. With me it never really goes a way. My legs and

> feet look like I have some dreadful disease. I haven't been able to

> wear shorts for 2 years. Hate to go around looking like somebody has

> beat me up. If you are already at 25 mgs you probably should have a

> talk with your doctor and see what he suggests. I can well

> understand why you want to get down on the pred. I do too. But when

> I do, then I get " real " bad. For me, the vasculitis is the worst

> part of the RP.

>

> The bars are in the oven and BOY do they smell good. I was very

> tempted to just drink the Almaretto and forget the bars and go have a

> nap. Stuff sure does smell good.

>

> You have a good weekend and give my love to Valarie. I have lost a

> lot of my hair from the autoimmune disease and decided after seeing

> the message about the hat party that I would get one. Found a cute

> white one at Walmart and I just wear it everywhere. Love, Marilyn

>

> 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

>

March 24, 2001