Re:

[Guest guest]

In a message dated 8/16/99 9:10:09 PM Central Daylight Time,

kllund@... writes:

<< Hope when I see

the doctor this time she has something to cure this tiredness. >>

,

If she does, let me know immediately what it is. :~) The fatigue is what

seems to get to me the most.

T.

[Guest guest]

Hi Ronnie,

Welcome to the group! It took 2 years for me to be diagnosed. I was on

methotrexate and prednisone. I am now off of both and am taking only paquinil

for maintainance. The only thing I know for sure about RP is that this group

has been a great help as far as information and support! My prayers are with

you!

From my little corner of the vineyard,

Mimi

[Guest guest]

In a message dated 9/2/99 7:48:41 PM Central Daylight Time, Rlr1999@...

writes:

<< I made the theapist thing up. : )

I heard from her last night. Roy >>

BEST LAUGH ALL WEEK, Thanks Roy, I should see that " therapist "

Love,

[Guest guest]

In a message dated 9/2/1999 8:40:10 PM Pacific Daylight Time,

Idigflower@... writes:

<< I should see that " therapist " >>

perhaps we all should. I know I am in need of some kind of therapy. : )

[Guest guest]

In a message dated 09/05/1999 10:57:25 PM Eastern Daylight Time,

Lu1953@... writes:

<< I agree with you Angie, and sometimes I think that has to be addressed as

well as the pain. Just thought I would put my input. : ) Lu

>>

if I am depressed there is no way on earth I am going to physically feel

decent so I fight it and fight it hard. My doctor gave me paxil for it but I

only take it when things get real bad. For some reason they don't take two

weeks to work on me like they are supposed to, only a few days and things

seem better and then I feel a little better

Angie

I know I am weird!

[Guest guest]

In a message dated 09/05/1999 11:01:34 PM Eastern Daylight Time,

Lu1953@... writes:

<< t was caused from RP. I had never heard about this until

it happened to me. after rereading the above this sounds >>

thanks Lu this is a new wrinkle to the RP I hadn't heard about this before

but hey what the hell it affects all the other senses why not destroy the

siliva along with the rest of the body

[Guest guest]

In a message dated 9/5/1999 9:20:35 PM Pacific Daylight Time,

AngieCATW1@... writes:

<< it took all that just to say where the jaw hinges? geesh >>

\

actually I just love saying......

mucous alveoli,

Try it...... mucous alveoli Isnt it great!

Waiter, I think I'll have the mucous alveoli.

Oh no, Janet is right. I must be taking something!

[Guest guest]

In a message dated 08/30/1999 11:16:44 PM Central Daylight Time,

Rpolychondritisonelist writes:

<< Oh T,

I'm so sorry! If you need anything, someone to talk to, a shoulder to cry

on, anything, let me know. Call me collect if you want to. ()

I'm so sorry.

>>

,

Thanks so much. You are a sweetheart. It has almost been just too hectic to

even make a phone call. When all of this mess came up concerning Dad, my

sister from North Carolina flew in, my other sister came to town, and my son

and his family drove in from Colorado.....so, along with everything else

going on, I also have company to deal with. Sigh. I must say, tho, that I

am enjoying my son and his family.

It's almost 2:00 a.m. and I'm trying to play catch-up on my emails now that

everyone is in bed.

Love,

T.

[Guest guest]

Have you girls tried using Lysine? Might me called Lysine E. Great for

mouth blisters.

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

,

I know it is hard being allergic yo so many different meds. I also

have had trouble - I did get ulcers/blisters in my mouth but they went

away. If I don't drink a bunch of water - they come back. In fact,

they come back occassionally but I know the meto has been helping some.

I pray the docs will find something to eliminate the cause of this

disease, and not just mask the symptoms.

Hang in there with the rest of us sweetie!

L.

[Guest guest]

Hi Lund here Was suppose to go to my Rheumy today but she was cill but

had a bad sinus infection so they sent me to the dr on call guess what she

hadn't a clue what to do with me so I had to tell her Then she miss

prescribed one of the drugs so my drugist had to call her and tell what the

right drug was so all in al it was another day in the life of an rp patient.

Tonight I have the headache from hell but that should be better in a day or

so I talked to Barb from S.D Shes having a heck of a time getting meds

regulated so keep her in your prayers. Went to see my sister in Wisconcin

before she leaves for Arizona for the winter ahd a nice time The ride there

and back is not fun because of the ribs but to see my sister I will put up

with some pain. My husband wants to take me to Holland this spring It has

been a dream of mine for a very long time so we have to convince the rheumy

that its a smart plan and then device a way to do it without killing me. We

did decide that we would have to travel first class and that I would have to

wear a mask to filter the air that I breathe as the air in the plane gets

pretty bad after 8 hours We don't quite know what to about the pressure in

the plane or how much pain meds we should bring with Dave figures I'd do O.K

for about 5 days It will give something to look forward to besides the darn

pain We have to plan so far in advance because of the passports and you know

how predictable R P is so its kind of scary but so is living with this darn

stuff so don't have a whole bunch to lose. 2 Of my grandkids are spending

the week with me next week Their mom and dad are going on a houseboat in

Lake of the Woods B.J is 13 and is 9 and lots of fun to have around

so am looking forward to that. Hope the headache is gone by then. One of my

grand daughters is up for homecoming Queen so have a big week coming up and

don't want to miss any of it. So that means coming home from work every day

this week and taking a nap except Thursday have to have a bone density test

that day Angie will say lots of prayers for your niece Nice to

see you're as fisty as ever keep it up its the only way we can keep sane .

Hope Janet and Pete are alright with Floyd What a mess that left behind

let us all know how you are doing We're call pulling for that stuff to

work on you. cWith all your allergys you don't have a lot of other options.

Is Lyle in S.D now Barb should get in touch with him if he is as they both

go to Mayo Different doctors but at least compare notes. Well I have to hit

the hay if I'm ever going to get over this stuff Take care everyone. Love

Lund

[Guest guest]

Hi Melinda,

I was the one that wrote about the heel spurs. This was in reference to

something someone was asking about fascitis.

As far as it being RP related, I don't know, but really don't think so. Of

course anywhere there is cartilage, RP can attack, so it just might be???

If I may ask, what other challenges are you facing now?

Please be sure and continue to ask any questions that you have. That's the

only way we can learn from each other.

Take care,

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

From: RLHIRTH@...

Hi, all....I continue to read your messages with great interest. I've had

RP at least 14 years (based on first recongizable symptoms),

but diagnosed only 5 years ago. Because of other medical challenges, I'm

never quite sure which symptoms to attribute to what.

Anyway, someone mentioned heel spurs in a recent message - is this an RP

symptom? I'm never sure what specialist to see, since

RP shows up in so many different locations. Heel problems seem to be the

latest rage here - I can't take prednisone any longer

due to its affect on glucose levels (stress diabetes), so I can't try that

to see if it would help on this symptom.

Also, has anyone found any relief for those pesky blisters (some call it

vasculitis, others petechiae)?

Thanks in advance for any information you have!

Melinda

[Guest guest]

I have a problem that if someone can help me figure out just may save my

niece a beating. She wrote me that she couldn't open an email and I opened it

for her,(dumb luck) well it downloaded something called light switch. I have

tried my uninstall program to get rid of it and it isn't working I went to

control panel and tried no luck HELP before choke her!

Love and hugs,

Angie

http://members.tripod.com/lvngwell/Angiesplace2.htm

http://hometown.aol.com/RLR1999/HomeRP.html

http://members.tripod.com/~autoimmune

[Guest guest]

L

You think the Harmone replacement from before caused the need for your d &

C's? Interesting! I have always had a flu shot with no problems at all. This

year though I am on Metho and am asking the doctor about it I am not sure now

as the rules change with metho. When you choked on that nut you must have

inflamed everything and probably pulled a muscle or two in the process. Hope

it gets better soon

Love and Gentle Hugs,

Angie

http://members.tripod.com/lvngwell/Angiesplace2.htm

http://hometown.aol.com/RLR1999/HomeRP.html

http://members.tripod.com/~autoimmune

[Guest guest]

In a message dated 10/9/1999 1:11:09 PM Pacific Daylight Time,

susuw@... writes:

<< Anything else you want me to tell them Roy? >>

Depends on what rating we want this group to have. : )

No, maybe we had better keep that story to ourselves. LOL

Please dont tie up the net. Jim and I are expecting some important mail from

Lu. LOL

[Guest guest]

Hi my name is Sharon I have had this for 5yrs you guys all sound like you are

dyeing.I take Pred every day for the last 3yrs I am on 10 mill now and going

off for awhile Am going down 1mill a day to get off. The Pred has gave me a

caterack and I will get it off at the end of next month,So far I have had a

sin infection that put me into the trama senter in San and then to

intensif car for a week almost killed me but all is ok now I am by all means

not a well person but I work I cater school lunches and love it I take care

of everyone in my house which includes 3 Grandchildren.If I didn't have this

life I have that demands so much of me I would probly be dead by now God must

really love me alot.I don't have insurance but I am on a ability to pay

through our co.My Dr is the most wonderful person and I would give my life

for him.He goes out of his way to make my life liveableI love him dearly.I

have been on alot of other drugs but Pred is all I will take They womted me

to go on clclosporin(sorry have a speeling proble) but did not go that

route,I have also got eye problem not anything to do with the Cateract that

comes with RP.I WILL NOT LET RP GET TO ME I live my life to the fullest.I

p;an on living for a long long time just like all you should I was a verry

healty person till I turned 50.Thanks for listing to me Sharon

[Guest guest]

OK, there were these 3 mountain climbers and this 45 ft. rope.

Anything else you want me to tell them Roy? :-)

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

You are asking if is sick? Boy, that is an understatement.

, tell them the story about the three mountain climbers and the 45 feet

of rope.

[Guest guest]

What am I being blamed for now? LOL

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

From: Rlr1999@...

was just asking if anyone else had problems with thier feet.

I think you mentioned that a couple of nights ago? Was it you or did

tell me wrong?

[Guest guest]

Hi L

Since you are getting no relief from the ribs maybe you Need to increase the

pred for a few days. That always worked on me when nothing else did. Thank

you for the prayers for my Mom, I appreciate all the kind thoughts going her

way.

Have you tried alternating between hot and cold? that sometimes help people

as well. Sorry to hear about your Mom. Does she have Osteoporosis? Hs to if

it happened just from walking. scary stuff isn't it?

Angie

[Guest guest]

Sharon welcome to the group and just love your attitude! That is the way you

have to look at a disease like RP. Unfortunately I am unable to work, the RP

left me legally blind but I miss it terribly. I am on Pred and methotrexate

and I guess something is helping a little. I have had this disease a long

time and have learned to live \with it and its problems. I also keep my own

house going, and I am glad I am still able to.

We are not dying here at all. WE offer each other whatever they need at that

point in their life. sympathy, a shoulder to cry on, a scolding if needed,

and friendship. that is the most important element of this list, friendship.

we exchange ideas, and medical visits information and hope we cam come up

with a link to the cause and eventual cure for RP

[Guest guest]

In a message dated 10/9/99 3:09:15 PM Central Daylight Time,

susuw@... writes:

<< Hi Lu,

Got the sinus infection back again and some pain in ribs, but other than

that I'm fantastic! LOL I'm OK, really! Thanks!

>>

Is it just a sinus infection? Have you been to the doc? Be sure to drink

plenty of fluids, get your rest. If you ever need me call me...Okay.....

Love ya!

Lu

[Guest guest]

In a message dated 10/9/99 3:14:22 PM Central Daylight Time, Rlr1999@...

writes:

<< Please dont tie up the net. Jim and I are expecting some important mail

from

Lu. LOL >>

yall are pitiful just pitiful LOL

[Guest guest]

In a message dated 10/9/1999 8:54:14 PM Pacific Daylight Time, Lu1953@...

writes:

<< << Please dont tie up the net. Jim and I are expecting some important

mail

from

Lu. LOL >>

yall are pitiful just pitiful LOL >>

We dont like to let a good thing get by to easily. LOL

[Guest guest]

In a message dated 10/9/99 10:56:59 PM Central Daylight Time, Rlr1999@...

writes:

<< We dont like to let a good thing get by to easily. LOL >>

I noticed........me and my big mouth..lol

[Guest guest]

Here are some answers to your questions

yes-yes-yes-no-no-yes-yes-no-no-yes-yes-no-yes-no-no-yes-no-no-no-20mil

I have been to trama unit 3yrs ago almost dead from sin.spent 1 week in

hospital 3 0f which were intes care to get my blood presher up I will not

take more than 10 mill of pred for anyreason they are to harmfull to the body

almost as bad as the RP I really feel the less drugs you take the better off

you are I am probly on of the most people you can know of that will not let

this get to I am really doing quit well.I really do have a lot of problems

tho but I live with them.I don't wont to be on any drugs.Good luck to

you.Just keep good thoughts and maby that could really help you.it does for

me---Sharon in San ,Ca

[Guest guest]

Hi Sharon

Glad you responded to my questions.

I was dx w/lupus back in 1991, but had problems for years before dx. If I

recall you said you had RP for 5 years.

You said the highest amt of pred you were on was 20 mg and you will only take

up to 10 mg. Are you saying that you will died first before you will take a

higher dosage, or you will deal with the situation as it arises?

Yes, Sharon I think we all share the same feeling that you have regarding RP.

However, everyone needs to vent and laugh.

You said you don't want to be on any drugs. What do you do for the pain?

Does the pain get to the point that you scream? One more questions, do you

have any other autoimmune disorders?

You must have a pretty good understanding boss, to let you take off when your

sick.

Gee it would be nice if the rest of world was like your boss. I worked for

the Federal Government for years and they just weren't the understanding.

Matter of fact I hired an atty. to fight for my job, when you work for the

Judicial section of the Government there isn't a watch dog over them. Yes, I

did win, but it came to a point that the doctors told me I couldn't work

anymore.

There's one thing that I have noticed about people w/autoimmune disorders,

whether it is RP, MS, Lupus or whatever, they have a very strong spirit and a

lot of fight in them. Everyone in this group have the same spirit.

Being realistic RP will eventually kill you, if nothing is done about it.

Meds are needed w/least side effects. As you well know this is a rare

disorder, the medical field is ignorant to this disorder. Better diagnostic

methods should be created for this disease.

I'm very happy to hear that you are doing so good w/o meds. I quess that's

another baffling thing about RP, some people can live w/out meds, while

others cannot. I have found this group to be very comforting and genuine in

their response. I have learn a lot about RP through this group. I'm so happy

that I have found this group.

I'm 46 years old, I'm not a grandmother yet, but I have two children, I'm not

married and yes I raised my children myself, and I live in a 9 room home w/14

garages. Yes, I've taken care of my dying mother at home by myself. Made it

through out that, thank God. I managed to keep my word w/mother. Never sent

her to a nursing home, she was bedridden, loved her dearly. (Smiling) Life is

Life, you must accept it on its terms or perish. I agree w/you about

attitude, it can make a big difference, however, it cannot change

circumstances or make your disease disappear. We have rec'd all of our

attributes from God himself, so we must experience the gambit of emotions.

He has given us physical necessities to cope w/these problems and it would be

foolish not to utilized them.

How often do you go to the doctors? I assuming that your RP is under

somewhat control at this point. Is this correct? If you don't mind, could

you share w/us your everyday problems w/RP.

Waiting for your Response, Take Care

Rene