RE: Still crazy after all these weeks. . . .

[Guest guest]

The dryness has gradually improved, but still isn't normal. Toothpaste still burns (same brand I've used for years--Sensodyne), so I just use a little & rinse it out fast. I have a dental appt next week & I'm going to ask him about it. Anybody got any ideas?

Rose,

There is a Wonderful product I found that works Really well on dry mouth, burning dryness, etc. It is called Biotene. It comes in toothpaste, mouthwash, and gum. You'll probably have to ask the pharmacist for it, but I know for me, I'd have quit the Remicade after the 1st infusion-- it really made my mouth so very dry.

Hugs to ya,

Tracie

[Guest guest]

The dryness has gradually improved, but still isn't normal. Toothpaste still burns (same brand I've used for years--Sensodyne), so I just use a little & rinse it out fast. I have a dental appt next week & I'm going to ask him about it. Anybody got any ideas?

Rose,

There is a Wonderful product I found that works Really well on dry mouth, burning dryness, etc. It is called Biotene. It comes in toothpaste, mouthwash, and gum. You'll probably have to ask the pharmacist for it, but I know for me, I'd have quit the Remicade after the 1st infusion-- it really made my mouth so very dry.

Hugs to ya,

Tracie

[Guest guest]

Hi Rose,

so good to hear from you and that you are moved.....take your time

getting settled...it will still be there! You cannot do it all at

one time, I have learned that. It is good that you had a very good

friend like you have to take you away for a few days......where in

Southern IN did you go???

As for the red bumps, I have one on my left knee cap...it has been

there for about 3 years now and grows a little but is still flat and

is scaley but does not itch or hurt....wierd!!! It started out

about the size of a dime and is now bigger than a quarter but the

Doc just looks at it and says hmmmmmmm......oh Well! And about

the mouth, mine is very dry also and from time to time, it is on

fire and I cannot even brush my teeth; other times it is ok and

every once in awhile, I get a " sore place " in it where my mouth will

be so sore and swell that I can hardly eat, then it will go

away...........and I am having trouble with my eyes also....need to

call my eye specialist.....

I am back on the big doses of Pred ....have been for 12 days now

and I do not tolerate it well at all! Hate that stuff! Take it

easy and try not to over do...I know you want to get straightened

up and all, but like I said, it will be there! You take care of

YOU!

Sending lots of love, hugs, and prayers,

Darlene

> BlankYou youngsters probably don't remember Simon & Garfunkel's song,

> " Still Crazy After All These Years. " It's a good song.

> Anyway, here goes a brief update on the life & time of Ramblin' Rose:

>

> sleeping in the new (different) house, but still lots of stuff to move.

> Boxes & stacks of stuff here; don't expect to get through it in my

> lifetime. I'm tired, tired, tired.

>

> I sent pictures from my prodigal daughter's wedding. Her husband is a

> nice man; I hope it's a good match. Her daughters are 7 and almost 15.

> Have you ever seen more gorgeous kids?

>

> My cousin Lulu (an angel in disguise) was here from San Diego & helped

> with the move, garage sale, staying with my mom & Sam while I was in San

> . It's too bad she's married with a bunch of kids; I'd keep her

> here!

>

> After being home from Texas for a week, my girlfriend Marcia came up &

> took me to southern Indiana to stay with her for a week. It was

> wonderful! She has a beautiful home on several wooded acres, a pool; she

> wouldn't let me do anything, let me sleep all I wanted. It was perfect

> timing, as I was on the brink of a meltdown. I didn't even check email;

> it was heavenly to have no responsibilities at all. Sam & my mom had lots

> of support & help, so I didn't hear from them. Marcia & I met in nursing

> school in 1969 & have been great friends since. Actually, I did have a

> responsibility while I was there; I had to pick deer ticks off her. She

> must have had a hundred ticks on her! Tiny little things. She didn't even

> go into the woods, just the edge of the yard. I had planned to walk in

> the woods, but changed my mind! The pool was just fine. She had red

> welts all over her & had to get some medication from her doctor. Anyway,

> I had a great time and she brought me home Friday.

>

> Physically: Off the Pred now & just 50mg of Imuran a day in an attempt to

> determine if muscle weakness a drug reaction. I tried stopping the

> Klonipin, but couldn't sleep because of legs hurting, so I restarted it.

> Still with severe right hip & leg pain; see a neurosurgeon Tuesday. Now

> I've had 2 weird things in the past few weeks; I'm hoping someone will

> have an idea. One thing is a skin lesion that came up on my leg in

> July--just popped up on the outside of my lower left leg. It was bright

> red, about pea-sized, almost flat. No itching or pain. I thought maybe

> it was an insect bite, but it never itched. Over the next few weeks, it

> stayed the same size, but gradually faded from red to brown, now it's

> almost gone. But there is now another one on my right shin. I know that

> erythema nodosum is supposed to be painful. Am I just paranoid? Since

> they are small & painless, my family doc wasn't too impressed. Now the

> second weird thing bothers me more. I've had a dry mouth for a year or

> more, but fairly abruptly it got a lot worse, late in July. I actually

> drank from a plastic cup under an ivy plant in someone's office! I had

> forgotten to take my water jug in with me & I just couldn't stand it. The

> guy stepped out for a moment & GULP. While in San , my mouth felt

> like it was swollen & the insides were sticking together. I kept biting

> the insides of my mouth. My lower lip felt like dozens of paper cuts

> inside & just brushing my teeth was very painful/burning. I couldn't see

> anything that looked like thrush. I didn't have a fever, but my lower jaw

> was really tender for days. The glands didn't feel swollen, but were

> tender. I had to suck on hard candy constantly to keep my mouth from

> sticking together! Even water didn't help, unless I held it in my mouth.

> My eyes weren't any drier than usual. I was really worried about

> Sjogren's syndrome. I got home late Monday night & couldn't sleep because

> of it. I went to an all-night pharmacy & bought some mouth gel, which is

> nasty, but it did allow me to get some sleep. The next day I saw my

> doctor, who thought I had an infection of the salivary glands & gave me

> Keflex. He also gave me Nystatin solution to swish & swallow, in case I

> was getting thrush. Well, I've finished the Keflex & still use the

> Nystatin. The dryness has gradually improved, but still isn't normal.

> Toothpaste still burns (same brand I've used for years--Sensodyne), so I

> just use a little & rinse it out fast. I have a dental appt next week &

> I'm going to ask him about it. Anybody got any ideas? I hadn't added any

> meds recently; actually had stopped the Pred, quinine & Klonipin, plus cut

> down the Imuran.

>

> Hmmm, seemed like somewhere up there I said I'd give a brief update. Oh,

> well, sorry about that.

>

> I have caught up with most of the messages. I don't think I'll try to

> write individual notes, but I will work hard to keep in the game now. My

> only excuse now is trying to finish the move, and of course, the

> mysterious red dots on my legs. I do have to allow a significant amount

> of time to contemplate those dots.

>

> Well, almost time for bed for me! Hope everyone has a restful night/day.

> Love, Rose

>

>

[Guest guest]

Hi Rose,

so good to hear from you and that you are moved.....take your time

getting settled...it will still be there! You cannot do it all at

one time, I have learned that. It is good that you had a very good

friend like you have to take you away for a few days......where in

Southern IN did you go???

As for the red bumps, I have one on my left knee cap...it has been

there for about 3 years now and grows a little but is still flat and

is scaley but does not itch or hurt....wierd!!! It started out

about the size of a dime and is now bigger than a quarter but the

Doc just looks at it and says hmmmmmmm......oh Well! And about

the mouth, mine is very dry also and from time to time, it is on

fire and I cannot even brush my teeth; other times it is ok and

every once in awhile, I get a " sore place " in it where my mouth will

be so sore and swell that I can hardly eat, then it will go

away...........and I am having trouble with my eyes also....need to

call my eye specialist.....

I am back on the big doses of Pred ....have been for 12 days now

and I do not tolerate it well at all! Hate that stuff! Take it

easy and try not to over do...I know you want to get straightened

up and all, but like I said, it will be there! You take care of

YOU!

Sending lots of love, hugs, and prayers,

Darlene

> BlankYou youngsters probably don't remember Simon & Garfunkel's song,

> " Still Crazy After All These Years. " It's a good song.

> Anyway, here goes a brief update on the life & time of Ramblin' Rose:

>

> sleeping in the new (different) house, but still lots of stuff to move.

> Boxes & stacks of stuff here; don't expect to get through it in my

> lifetime. I'm tired, tired, tired.

>

> I sent pictures from my prodigal daughter's wedding. Her husband is a

> nice man; I hope it's a good match. Her daughters are 7 and almost 15.

> Have you ever seen more gorgeous kids?

>

> My cousin Lulu (an angel in disguise) was here from San Diego & helped

> with the move, garage sale, staying with my mom & Sam while I was in San

> . It's too bad she's married with a bunch of kids; I'd keep her

> here!

>

> After being home from Texas for a week, my girlfriend Marcia came up &

> took me to southern Indiana to stay with her for a week. It was

> wonderful! She has a beautiful home on several wooded acres, a pool; she

> wouldn't let me do anything, let me sleep all I wanted. It was perfect

> timing, as I was on the brink of a meltdown. I didn't even check email;

> it was heavenly to have no responsibilities at all. Sam & my mom had lots

> of support & help, so I didn't hear from them. Marcia & I met in nursing

> school in 1969 & have been great friends since. Actually, I did have a

> responsibility while I was there; I had to pick deer ticks off her. She

> must have had a hundred ticks on her! Tiny little things. She didn't even

> go into the woods, just the edge of the yard. I had planned to walk in

> the woods, but changed my mind! The pool was just fine. She had red

> welts all over her & had to get some medication from her doctor. Anyway,

> I had a great time and she brought me home Friday.

>

> Physically: Off the Pred now & just 50mg of Imuran a day in an attempt to

> determine if muscle weakness a drug reaction. I tried stopping the

> Klonipin, but couldn't sleep because of legs hurting, so I restarted it.

> Still with severe right hip & leg pain; see a neurosurgeon Tuesday. Now

> I've had 2 weird things in the past few weeks; I'm hoping someone will

> have an idea. One thing is a skin lesion that came up on my leg in

> July--just popped up on the outside of my lower left leg. It was bright

> red, about pea-sized, almost flat. No itching or pain. I thought maybe

> it was an insect bite, but it never itched. Over the next few weeks, it

> stayed the same size, but gradually faded from red to brown, now it's

> almost gone. But there is now another one on my right shin. I know that

> erythema nodosum is supposed to be painful. Am I just paranoid? Since

> they are small & painless, my family doc wasn't too impressed. Now the

> second weird thing bothers me more. I've had a dry mouth for a year or

> more, but fairly abruptly it got a lot worse, late in July. I actually

> drank from a plastic cup under an ivy plant in someone's office! I had

> forgotten to take my water jug in with me & I just couldn't stand it. The

> guy stepped out for a moment & GULP. While in San , my mouth felt

> like it was swollen & the insides were sticking together. I kept biting

> the insides of my mouth. My lower lip felt like dozens of paper cuts

> inside & just brushing my teeth was very painful/burning. I couldn't see

> anything that looked like thrush. I didn't have a fever, but my lower jaw

> was really tender for days. The glands didn't feel swollen, but were

> tender. I had to suck on hard candy constantly to keep my mouth from

> sticking together! Even water didn't help, unless I held it in my mouth.

> My eyes weren't any drier than usual. I was really worried about

> Sjogren's syndrome. I got home late Monday night & couldn't sleep because

> of it. I went to an all-night pharmacy & bought some mouth gel, which is

> nasty, but it did allow me to get some sleep. The next day I saw my

> doctor, who thought I had an infection of the salivary glands & gave me

> Keflex. He also gave me Nystatin solution to swish & swallow, in case I

> was getting thrush. Well, I've finished the Keflex & still use the

> Nystatin. The dryness has gradually improved, but still isn't normal.

> Toothpaste still burns (same brand I've used for years--Sensodyne), so I

> just use a little & rinse it out fast. I have a dental appt next week &

> I'm going to ask him about it. Anybody got any ideas? I hadn't added any

> meds recently; actually had stopped the Pred, quinine & Klonipin, plus cut

> down the Imuran.

>

> Hmmm, seemed like somewhere up there I said I'd give a brief update. Oh,

> well, sorry about that.

>

> I have caught up with most of the messages. I don't think I'll try to

> write individual notes, but I will work hard to keep in the game now. My

> only excuse now is trying to finish the move, and of course, the

> mysterious red dots on my legs. I do have to allow a significant amount

> of time to contemplate those dots.

>

> Well, almost time for bed for me! Hope everyone has a restful night/day.

> Love, Rose

>

>

[Guest guest]

The dr's found i had sarcoid was a dry mouth and swollen saliva glands. Chaeck it out.

Pomy

> >Reply-To: Neurosarcoidosis >To: <Neurosarcoidosis > >Subject: Still crazy after all these weeks. . . . >Date: Sun, 15 Aug 2004 21:53:55 -0500 > >BlankYou youngsters probably don't remember Simon & Garfunkel's song, "Still Crazy After All These Years." It's a good song. >Anyway, here goes a brief update on the life & time of Ramblin' Rose: > >sleeping in the new (different) house, but still lots of stuff to move. Boxes & stacks of stuff here; don't expect to get through it in my lifetime. I'm tired, tired, tired. > >I sent pictures from my prodigal daughter's wedding. Her husband is a nice man; I hope it's a good match. Her daughters are 7 and almost 15. Have you ever seen more gorgeous kids? > >My cousin Lulu (an angel in disguise) was here from San Diego & helped with the move, garage sale, staying with my mom & Sam while I was in San . It's too bad she's married with a bunch of kids; I'd keep her here! > >After being home from Texas for a week, my girlfriend Marcia came up & took me to southern Indiana to stay with her for a week. It was wonderful! She has a beautiful home on several wooded acres, a pool; she wouldn't let me do anything, let me sleep all I wanted. It was perfect timing, as I was on the brink of a meltdown. I didn't even check email; it was heavenly to have no responsibilities at all. Sam & my mom had lots of support & help, so I didn't hear from them. Marcia & I met in nursing school in 1969 & have been great friends since. Actually, I did have a responsibility while I was there; I had to pick deer ticks off her. She must have had a hundred ticks on her! Tiny little things. She didn't even go into the woods, just the edge of the yard. I had planned to walk in the woods, but changed my mind! The pool was just fine. She had red welts all over her & had to get some medication from her doctor. Anyway, I had a great time and she brought me home Friday. > >Physically: Off the Pred now & just 50mg of Imuran a day in an attempt to determine if muscle weakness a drug reaction. I tried stopping the Klonipin, but couldn't sleep because of legs hurting, so I restarted it. Still with severe right hip & leg pain; see a neurosurgeon Tuesday. Now I've had 2 weird things in the past few weeks; I'm hoping someone will have an idea. One thing is a skin lesion that came up on my leg in July--just popped up on the outside of my lower left leg. It was bright red, about pea-sized, almost flat. No itching or pain. I thought maybe it was an insect bite, but it never itched. Over the next few weeks, it stayed the same size, but gradually faded from red to brown, now it's almost gone. But there is now another one on my right shin. I know that erythema nodosum is supposed to be painful. Am I just paranoid? Since they are small & painless, my family doc wasn't too impressed. Now the second weird thing bothers me more. I've had a dry mouth for a year or more, but fairly abruptly it got a lot worse, late in July. I actually drank from a plastic cup under an ivy plant in someone's office! I had forgotten to take my water jug in with me & I just couldn't stand it. The guy stepped out for a moment & GULP. While in San , my mouth felt like it was swollen & the insides were sticking together. I kept biting the insides of my mouth. My lower lip felt like dozens of paper cuts inside & just brushing my teeth was very painful/burning. I couldn't see anything that looked like thrush. I didn't have a fever, but my lower jaw was really tender for days. The glands didn't feel swollen, but were tender. I had to suck on hard candy constantly to keep my mouth from sticking together! Even water didn't help, unless I held it in my mouth. My eyes weren't any drier than usual. I was really worried about Sjogren's syndrome. I got home late Monday night & couldn't sleep because of it. I went to an all-night pharmacy & bought some mouth gel, which is nasty, but it did allow me to get some sleep. The next day I saw my doctor, who thought I had an infection of the salivary glands & gave me Keflex. He also gave me Nystatin solution to swish & swallow, in case I was getting thrush. Well, I've finished the Keflex & still use the Nystatin. The dryness has gradually improved, but still isn't normal. Toothpaste still burns (same brand I've used for years--Sensodyne), so I just use a little & rinse it out fast. I have a dental appt next week & I'm going to ask him about it. Anybody got any ideas? I hadn't added any meds recently; actually had stopped the Pred, quinine & Klonipin, plus cut down the Imuran. > >Hmmm, seemed like somewhere up there I said I'd give a brief update. Oh, well, sorry about that. > >I have caught up with most of the messages. I don't think I'll try to write individual notes, but I will work hard to keep in the game now. My only excuse now is trying to finish the move, and of course, the mysterious red dots on my legs. I do have to allow a significant amount of time to contemplate those dots. > >Well, almost time for bed for me! Hope everyone has a restful night/day. Love, Rose > ><< Ginny_Rene_.jpg >> ><< .jpg >> ><< a.jpg >> MSN 8 helps ELIMINATE E-MAIL VIRUSES. Get 2 months FREE*.