Re: (unknown)

[Guest guest]

SHARON,

How old are your children? Girls/Boys?

(unknown)

> Please pray for strength for me tomorrow. It will be

> my first 13 1/2 hour day with both the kiddos.

> Hurting today, and my eyes are trying to flare, but I

> am trying to force them not to. Take care, and I'll

> be back on line on Wednesday. (I might be able to

> sneak in about 15 minutes in the morning.)

>

> Love, Sharon

>

> =====

>

>

> __________________________________________________

>

[Guest guest]

In a message dated 1/14/02 4:24:49 PM Pacific Standard Time,

katdavis@... writes:

<< Gracious God, please give Sharon enough strength to meet tomorrow's

challenges. Take away her pain and bless her with the courage to get

through just one more day. Amen

>>

, what a beautiful prayer for Sharon. Don't we just have the

greatest group ever????

[Guest guest]

Sharon, how'd you do? I was singing 'Rock-a-Bye-Baby' several times today

in hopes that telepathically they'd reach the little guy. I pray that

tomorrow will be a better day yet.

(unknown)

> >

> >

> > > Please pray for strength for me tomorrow. It will

> > be

> > > my first 13 1/2 hour day with both the kiddos.

> > > Hurting today, and my eyes are trying to flare,

> > but I

> > > am trying to force them not to. Take care, and

> > I'll

> > > be back on line on Wednesday. (I might be able to

> > > sneak in about 15 minutes in the morning.)

> > >

> > > Love, Sharon

> > >

> > > =====

> > >

> > >

> > > __________________________________________________

> > >

[Guest guest]

--- wrote:

> Sharon, how'd you do? I was singing

> 'Rock-a-Bye-Baby' several times today

> in hopes that telepathically they'd reach the little

> guy. I pray that

> tomorrow will be a better day yet.

>

Thanks, ! I did a bunch of rocking and

singing. Babies are so sweet! They love how we sing,

even if it makes dogs howl! It was not a good day,

suffice to say. I have to go talk to my daughter

today and it is not going to be easy. I almost fell

three times while carrying the baby around. As the

day wore on, and I got more tired, more pain, I just

couldn't stay on my feet. Twice I fell onto the couch

and once into my chair, so he was O.K., but it could

have been devastating. My daughter does not want to

see how my health has gone downhill, but this is time

for her to look very honestly at me. I feel that at

this point I am a danger to the baby and I cannot live

with that.

On a happier note, I get to go to a school assembly

with my nine yr old grandson this morning. He is

going to be presented with an award for being student

of the month. I am so proud of him.

Hope everyone has a wonderful day today, and that your

pain vanishes! Love, Sharon

__________________________________________________

> > > >

[Guest guest]

Sharon,

I'm sorry to hear that it was so difficult, but I'm really glad

you're willing to be honest with your daughter so quickly. Not only

is it dangerous for your grandson, it's dangerous for you also! Take

care and I hope the assembly was fun this morning!

[Guest guest]

--- mmjw3 wrote:

> Sharon,

> I'm sorry to hear that it was so difficult, but I'm

> really glad

> you're willing to be honest with your daughter so

> quickly. Not only

> is it dangerous for your grandson, it's dangerous

> for you also! Take

> care and I hope the assembly was fun this morning!

>

>

>

>

Thanks for the support, . I do appreciate it

from all! The assembly was so neat. Each teacher

honored student/students from their class. Each

student rec'd an award to frame and a pin. Jordan is

such a neat kid, and he really is a great student. I

hope this encourages him to continue in that. Hope

your day is going well. Can I add to the worry wort

list? You mentioned going to Hawaii soon so---be

careful in the sun if you are on MTX. Take care, Sharon

=====

__________________________________________________

[Guest guest]

Dear Joan,

" WOW " Now, I believe that's just how I started my first email when I found

this group! You have come to a good place. My name is , I'm 53, 3

grown kids, 3 granddaughters (the youngest -5- lives here 'bout 99% of the

time), married, and had to take disability retirement last July from a job I

loved here in Kansas City. My strange symptoms began in Sept. 2000 w/sinus

infections, fluid in the ears, flu-like aches & pains. Took lots of

antibiotics and steroids, but symptoms would re-appear. Then the coughing

began-so violent I fractured a rib. Then wheezing, asthmatic symptoms,

shortness of breath, and my liver enzymes shot way up. My primary care

physician/saint kept testing and sending me for second opinions until a

local pulmonologist and rheumatologist suspected RP and sent me to the Mayo

Clinic in Rochester, MN. After a full battery of tests there, I was

diagnosed with RP and Wegener's Granulomatosis overlapping. Treatment plan

for me is Cytoxan, Bactrim, Prednisone, Fosamax for my bones, Prevacid for

my stomach, Serevent, Xanax to calm down that little muscle that makes me

want to cough, and Ambien to help me sleep because the Prednisone causes

insomnia. I also take lots of vitamin supplements including 1500 mg

calcium. I had just lowered my Pred. to 7.5 mg per day until I got

bronchitis this past Monday, so it's back up to 40 mg - not for long I hope.

Most of my problem is pulmonary. I have a lot of permanent damage to my

trach and main bronchial airways. The ears, nose, joints, etc. have only

flared once-very mild.

Seems like everyone in this group has differences and similarities and great

big hearts! I, like you, am glad this group formed and is open to us. Keep

reading and posting. And remember, not too many doctors really know much

about RP. So, research and learn as much as you can and let them know what

you've learned. If they aren't receptive or aren't listening, move on.

It's good to have lots of baseline tests taken so when flares occur, damage

can be assessed.

Also, since I'm immune-compromised, I always let the doctor's receptionist

know so I can be moved to an exam room right away. I do this at my

granddaughter's pediatrician also. Don't need any more bugs than I already

come in contact with!

Sorry to be so wordy, but 40 mg of Pred will keep me up most of the night.

Hope this makes sense in the morning!

I'm praying for you, Joan.

(unknown)

> WOW! I am so happy to be a part of your group. I have

> just finished reading all of the E-Mail and am amazed

> to find so many caring people in one place. I want to

> introduce myself to all of you. My name is Joan, I'm

> 49 years old, have 3 sons who all live with me. I'm

> divorced and have worked since I was 16. I was

> diagnosed about 4 months ago. I have had the symptoms

> for over 10 years, but was always treated for ear

> infections. I have had my share of dose packs over

> the years never dreaming that someday I would be on it

> forever. I also have hypothroidism and had half of my

> thyroid removed. I will have many questions, so

> thanks

> for inviting me to ask. The Prednisone is driving me

> crazy. I'm on 30 mg. a day supplemented with

> Methyltrexate once a week. I can only manage to work

> 2 or 3 days a week if I'm lucky. I'm also having to

> take 100 mg.Zoloft per day for the depression. Are any

> of the rest of you taking meds. for depression? I

> didn't mean to make this such a long post. Again

> thank you for putting this group together. I look

> forward to interacting with such a loving and caring

> group.

>

> W

>

> __________________________________________________

>

[Guest guest]

Hi Joan,

Happy to meet you but sorry you have RP. My name is Sandy,I'm

53 yr. old, Married with 5 kids and 5 grandkids. I am from Ohio.

Was dx. in May of 99 but the docs think I had RP for at least 10 yr.s before dx.

Looking forward to getting to know you.

Hugs,

Sandy

----- Original Message ----- WOW! I am so happy to be a part of your group. I havejust finished reading all of the E-Mail and am amazedto find so many caring people in one place. I want tointroduce myself to all of you. My name is Joan, I'm49 years old, have 3 sons who all live with me. I'mdivorced and have worked since I was 16. I wasdiagnosed about 4 months ago. I have had the symptomsfor over 10 years, but was always treated for earinfections. I have had my share of dose packs overthe years never dreaming that someday I would be on itforever. I also have hypothroidism and had half of mythyroid removed. I will have many questions, sothanksfor inviting me to ask. The Prednisone is driving mecrazy. I'm on 30 mg. a day supplemented withMethyltrexate once a week. I can only manage to work2 or 3 days a week if I'm lucky. I'm also having totake 100 mg.Zoloft per day for the depression. Are anyof the rest of you taking meds. for depression? Ididn't mean to make this such a long post. Againthank you for putting this group together. I lookforward to interacting with such a loving and caringgroup.W__________________________________________________

[Guest guest]

Amber it is good to hear from you. Please let your mom know that we are

thinking of her. Keep us posted as to how she is doing.

hugs

[Guest guest]

(unknown)

hi everyone

well i just back from dr. and guess what after being off pred for a month, yep your right, back on i go, just wanted to scream oh shit. he gave me a shot of 100 mgs there in the office, says the Rp has caused traceaitis(SP) and its settling in the voice box. well duh i could have told him that, don't have much voice. said the throat is swollen, around the voice box. weird stuff this rp. My ears are fine but now its attaching the throat. So I guess thats why I have felt so bad all week. I don't really have a sore throat at all it just burns and hurts like a toothache. Also have a steriod inhaler, hoping to loosen things up a bit. Don't you just love this cRaP.

dawn

[Guest guest]

Dawn,

I sure hope you'll start feeling better soon. It's so disappointing to have these setbacks. I haven't been off of Prednisone yet but had managed to get down to 7.5 mg until the bronchitis. The dr. said I'd be able to get back down to that level fairly quick, though. Hope he's right. And I hope you'll be able to as well. We need to find you a stress-free zone to hide out in for a while. You can come stay with me in KC if you'd like! No stress here, HAHAHAHAHAHA! Take care.

(unknown)

hi everyone

well i just back from dr. and guess what after being off pred for a month, yep your right, back on i go, just wanted to scream oh shit. he gave me a shot of 100 mgs there in the office, says the Rp has caused traceaitis(SP) and its settling in the voice box. well duh i could have told him that, don't have much voice. said the throat is swollen, around the voice box. weird stuff this rp. My ears are fine but now its attaching the throat. So I guess thats why I have felt so bad all week. I don't really have a sore throat at all it just burns and hurts like a toothache. Also have a steriod inhaler, hoping to loosen things up a bit. Don't you just love this cRaP.

dawn

[Guest guest]

In a message dated 1/25/02 2:19:21 PM Pacific Standard Time,

katdavis@... writes:

<< he gave me a shot of 100 mgs there in the office, says the Rp has caused

traceaitis(SP) and its settling in the voice box. well duh i could have

told him that, don't h >>

Dawn, Well cRaP!!! I'm sorry to hear this. But I am glad that he

recognized it and is trying to stop it in it's tracks. Gosh girl, you just

shouldn't have to take any more. You are in my thoughts...

Love ya

[Guest guest]

Thanks Dawn, it is so true. Hope you are feeling better today.

hugs

<<

Sometimes in the daily challenges that life gives us, we miss what is

really important. We may fail to say hello, please, or thank you,

congratulate someone on something wonderful that has happened to them,

give a compliment, or just do something nice for no reason. As you go

through this week, this month, this year, recognize people who pack

your parachute.

>>

[Guest guest]

In a message dated 2/13/02 8:34:27 PM Pacific Standard Time,

katdavis@... writes:

<< I wish you all a Happy Valentine's Day. Let's go eat some chocolate! >>

Oh that's a great idea . I'm ready. LOL Thank you for your

encouragement. I think we all could use a little of it now.

[Guest guest]

Hey girl,

Happy Valentine's Day to you and to all also.

This sound like a plan, where is my chocolate? Enjoy!

love

Lu

.. Let's go eat some chocolate!

God bless,

[Guest guest]

Amber,

I will keep you and your mother in my prayers. If I had you address I would send a card for her. Please keep us posted!

Lots of love

Glenda

[Guest guest]

Amber,

I will keep your Mother in my prayers.

Please let us know how she is doing.

SandyHi everyone,This is Amber. I have been tied up a lot lately, so I haven't been reading any of the messages on the group site. My mom, Carol, has been quite sick and she had stents put in today. I just wanted to send an email out and ask for your prayers. She has been in and out of the hospital since January. I hope you are all doing well. Thank you for the support you have given us int he past and I will keep you posted on how my mom is and what we learn.God Bless,Amber 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]

Hi

I think 295 is a little expensive. I forgot what city you said you lived in, but if you have any of those little oriental hair shops in your area i would try one of them first. I think you can get a wig that has human hair on it for about 100.00. But if their the only store in your town that sells hair pieces and wigs etc.... then i could see why they would charge that much for a wig.

Sorry to hear that you are just not feeling well. This disease works in cycles it seems. One minute you feel half normal again. The next minute it's like what happened. I know right now i feel good. My energy level is high. I am on 14mgs of pred. and will be dropping to 13mg in a couple of days for the next month and so on.

But everything will get better, it may not seem like it now, but believe me it will, it has to. If you like the wig you saw, buy it. Make yourself happy. Well i will be quiet now, ha ha. Goodbye

Tell Kim i said Hello

Take Care------

(unknown)

Well I just returned from looking at wigs. When I woke up this morning there was more hair in the bed than on my head. Pretty soon I will be able to paint my head black and write 8 on it like a pool ball. This is the most difficult thing for me. The wig I am looking at his straight , chin length, parted down the middle with bangs.I have never looked at them before and was surprised at the prices. I went to a shop that dealt in chemo patients.So there wigs have natural looking scalps, and soft insides for people with no hair at all. The one I may get cost $295. Is that alot for a wig? But if the cytoxan has caused this and I have to be on it for a long time then I guess I want something that looks natural. You cant really tell by my picture I sent but I have straight hair and it is down (OR WAS) to my shoulders. I also bought a hat to wear if I go somewhere during the day. Thats if I will ever feel good enough to go anywhere. I have been off the predisone for a month now and am having all kinds of problems. I went from 1000 a day, to 280, to 80 and then down 10 every week. Then nothing. Now my throat is hurting bad, breathing difficut at times, short winded, and every joint hurts, weakness all over The legs feel like they are to heavy to pick up.I asked the Dr. when the old is coming back and he said never. Thanks alot!!!! Oh well yall said thats what this is here for to vent so look out. HAHAHA Thanks for listening though. Hugs to everyone NANCYDISCLAIMER!!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]

hi

so sorry to here about your loss i have,nt been on the group lately as have had some family troubles but would just like to say that my thought are with you and your family

pam/bev

[Guest guest]

--- suesue59241 wrote:

> To Everyone in the RP Group-

> On March 4th my mom, Carol, died at Beth Israel

> Deaconess in Boston.

> The Carol Arnold Family (Amber)

So very sorry to hear about your loss. You are a

wonderful daughter! It is always hard to lose a

parent. I will remember you and the family in my

prayers.

Love, squeek

=====

__________________________________________________

[Guest guest]

Carol arnold Family,

Toutes mes condoléances.

Marie-pia

[Guest guest]

Amber,

So sorry to hear of your loss! You are such a wonderful daughter and I am sure your Mom knew that. I will keep you and your family in my prayers and thoughts! If you need anything we are here for you!

Lots of love

Glenda

[Guest guest]

Carol, we all hurt with you. Just remember, as much as you loved your mom, God loves her more. She's free of pain now. And she will always be with you in her special way.

Love and God Bless,

Jo

Re: (unknown)

Carol, my deepest sympahies at the loss of your mother. There is no closer bond in the world and I know that you will miss her. Just remember, you can always talk to her, and you know she will be listening. Love, Judy O

Re: (unknown)

--- suesue59241 wrote:> To Everyone in the RP Group-> On March 4th my mom, Carol, died at Beth Israel> Deaconess in Boston.> The Carol Arnold Family (Amber)So very sorry to hear about your loss. You are awonderful daughter! It is always hard to lose aparent. I will remember you and the family in myprayers.Love, squeek=====__________________________________________________

[Guest guest]

Carol, my deepest sympahies at the loss of your mother. There is no closer bond in the world and I know that you will miss her. Just remember, you can always talk to her, and you know she will be listening. Love, Judy O Re: (unknown) --- suesue59241 wrote:> To Everyone in the RP Group-> On March 4th my mom, Carol, died at Beth Israel> Deaconess in Boston.> The Carol Arnold Family (Amber)So very sorry to hear about your loss. You are awonderful daughter! It is always hard to lose aparent. I will remember you and the family in myprayers.Love, squeek=====__________________________________________________

[Guest guest]

Amber, this is Judy Ostry, my deepest sympathies on the loss of your mother. It is a relationship that never ends. Remember she will always be there when you want to talk to her. I'll pray for an easing of your heartache. Love, Judy O (unknown) To Everyone in the RP Group-On March 4th my mom, Carol, died at Beth Israel Deaconess in Boston.She had been hospitalized in Falmouth and they felt she was not doingwell so they transported her to Boston where they placed three stentsin her. The stents went in successfully but they said there was moredamage to the smaller bronchial tubes that could not be stented.They told me that they needed to know mom's wishes for when they pullthe ventilater out. They felf that she would not make it. My fatherand my brother were flown in. We tried to find hope. My mom wasable to make the choice herself that she would not continue anymore. We stayed with her as she pasted and she is not suffering anymore.My family and I want to thank you all for all of your support andprayers. It is unfortunate that we have to have this pain in ourlife but it so wonderful that there is a community out there that canbe so helpful. We learned so much about this disease and my mom wasable to connect with someone else with RP. It really helped to takeout the mystery of it all.I would really like to know how to make a donation to the RPFoundation. If anyone could direct me to an email address or phonenumber I would greatly apprecieate it.I don't know how, but if there is ever anything that can be done tobring awareness to RP - I would really like to be apart of it. Iwant to help in anyway that is needed. My home number is so please call on me for anything!Thank you again RP Group. My family and I will continue hope for acure and we will always keep you all in our prayers.The Carol Arnold Family (Amber)