Re: Sharon

[Guest guest]

Sharon

You hang in there and don't ever feel bad about blowing off steam! If you need me I am only a few miles away. Maybe I can help you in some way. Please call if you need me! I will feel bad if you don't! It is hard to be a parent/caregiver when you are not used to it and with RP it is no fun either. Let me tell you from expience! Your family will just have to understand things are different now. I know they know it is different but sometimes we have to lay down the rules or how we really are feeling.

I know it is hard cause I am the type that has to do it myself. Yesterday I helped the little one clean her room and I have to stop after about a half hour of work and rest. I am the type of person who likes to get it done and see the job to the end. Well RP has slowed me down.... It took me 3 hours and I was worn out after that.LOL I was talking to Mike after and he said I know it is hard for you cause you used to work circles around me. (I would go non stop until I was done and he would have to stop and take breaks!)

Take care and know you are in my thoughts and prayers! Hope the blood work is all okay!

Lots of Love

Glenda

O.K. I'll shut up for now. Sorry I spewed this allover!Hope you are feeling better this morning. I'm off toget my blood work just as soon as I get finished here.Just the regular stuff.Love you, Sharon

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[Guest guest]

Sharon,

Glad you enjoyed your sister day and hope you get your much needed rest. It seems like when they first get you started on the right med it takes awhile for your system to adjust to it. Just rest now and it will pass later. Sure I still have days that my body says rest....I do or I pay for it later. Know I think of you often.

BTW I hate football too but don't tell anyone!LOL Sports are okay if you know someone playing in them but I just can't get into watching them on TV.

Lots of love

Glenda

Thanks for the encouragement, Glenda. I really doappreciate it. I've been having plenty of problemswith fatigue for years now, and it just seems to getworse. Even when the meds are helping my ears, I amstill just so tired constantly, so I know exactly whatyou are talking about. In fact, I think I need to gotake a little rest right now. It was "sister's day"today, and I am pooped. Talk to you later. Love, Sharon

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[Guest guest]

Oh my goodness. You poor thing if you are related to me!LOL I do like peanut buter and yes I am nuts. I don't like to iron either. Oh I would love you for a sister....

Lots of Love

Glenda> Sharon, you are such a brave person... Are you> related to Glenda or Heidi???? > LOL > > Gosh we will miss you something awful... Please> post when you can.... and > let us know what we can do to help. > > hugs> > Couldn't be related to Heidi--I don't know how toiron! Plus, I am a peanut butter lover. It must beGlenda! Maybe I'm just nuts! Sharon=====__________________________________________________

[Guest guest]

Sharon, I'm so Glad that the Remicade infussion went so well for you.

Sounds like you were treated like a queen... Gosh I hope this does the trick

for good. Know you are in my thoughts and prayers.

Have a great weekend and get some rest.

hugs

[Guest guest]

Glenda, I'm so sorry to hear about Phyliss, your sister. I will keep her in my

prayers... We just can't let 2002 be like 2001. Yep, I'm worrying already.

I'm at my sisters now and will probably be her until Sunday. So if I don't post

you will all know that I'm okay. Will try to get my mail from here when I have

time. I'm enjoying her BIG front porch and the veiw or the mountains, the pond

in front, the horses in back and the Canadian Geese that fly into the pond for

supper. LOL Maybe I will never come home.

Love ya all and will talk to you soon

[Guest guest]

Gosh are you taking lessons from and Me!LOL I am doing okay really I am. I have had a cold that has held on forever it seems just the typical stuff with a suppressed immune system. Mike is not taking any typical medications as you know. None worked due to the liver problems that they caused. He has been taking grapefruit pectin that comes in the pill or powder forms from the health food store. I don't know whether or not it is helping him because he hasn't been to see the heart specialist for awhile but I do know it is really made a difference for another lady that I know who is taking it.

Sorry that you are unable to care for the kids but I am sure it will be for the best. You need to take care of you first then the kids and it will all work out in the end. It would be fun to get together again. I just wish I could get the photos off my digital camera. My cable to it is at my sisters so I still haven't been able to down load even with the brand new computer.

Oh yah my Sister is back to visiting the Doctor's again. Surgery she had in August didn't last. Back for tests to see if there is anything they can do or if they are going to have to start all over again. Please keep her in your prayers.

Stop worrying and I do enough for the whole group!LOL

Lots of Love

Glenda

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[Guest guest]

Glenda,

So sorry to hear about your sister. Hope the docs can come up with something to help her.

Hugs,

Sandy

Gosh are you taking lessons from and Me!LOL I am doing okay really I am. I have had a cold that has held on forever it seems just the typical stuff with a suppressed immune system. Mike is not taking any typical medications as you know. None worked due to the liver problems that they caused. He has been taking grapefruit pectin that comes in the pill or powder forms from the health food store. I don't know whether or not it is helping him because he hasn't been to see the heart specialist for awhile but I do know it is really made a difference for another lady that I know who is taking it.

Sorry that you are unable to care for the kids but I am sure it will be for the best. You need to take care of you first then the kids and it will all work out in the end. It would be fun to get together again. I just wish I could get the photos off my digital camera. My cable to it is at my sisters so I still haven't been able to down load even with the brand new computer.

Oh yah my Sister is back to visiting the Doctor's again. Surgery she had in August didn't last. Back for tests to see if there is anything they can do or if they are going to have to start all over again. Please keep her in your prayers.

Stop worrying and I do enough for the whole group!LOL

Lots of Love

Glenda

____________________________________________________ IncrediMail - Email has finally evolved - Click Here 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,

Just because you can't do some of the things you think you should do doesn't mean you are failing or a failure. We just have to learn our priorities. First you have to get you under control and then the rest will fall back into place.

I was talking to at Chat the other day and she said she goes to Portland to see her family often. Maybe we will/could make a trip up there to see Dagny and . Wouldn't that be fun. Well maybe after the weather gets better.

My sister goes to see her surgeon on Monday. I don't know what is the hold up but she has blood clots plugging the artery and causing it to colapse. Hope they don't put it off too long. She is on the Oregon Health plan so I imagine that is why there no rush. I will keep you updated. Please keep her in your prayers.

Take care and try not to worry too much.

Lots of love

Glenda

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[Guest guest]

Sharon,

How are you doing? Hope you are feeling some better! I am not so much feeling bad just the neck and ear thingy. The only thing I am having trouble with is sleeping. Up and down all night! Not fair! I am not even taking pred and I can't sleep!LOL Take care and know I think of you often!

Lots of love

Glenda

Thanks, Glenda! Sounds like you are having a roughtime yourself. So glad that you have a great rheumyand that he listens to you and tries to help. Hopeyou are feeling better really soon. Love, Sharon

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[Guest guest]

Hi Sharon, well , I didn't make it to the used book store today, so am I out

of the dog house? LOL But I did send my daughters. LOL They only came back

with one book. I'm like you, I usually have a big bag full then I don't have

to go and spend money every day (which would be easy for me to do there.)

I'm so glad that you got to see your grandbabies. Makeila bought Papa a

" Ken " doll last Father's Day. Well, now he can play too. LOL She picked it

out herself because she wanted PaPa to play with us too. As you can see

she's a Papa's girl. lOl Wish I had more. I'm in the mood for a baby. But

guess I'll have to be patient and wait a few more years. LOL

Hope you are resting today and feeling rejuvenated by the little ones.

hugs.

[Guest guest]

In a message dated 2/11/02 5:17:34 PM Pacific Standard Time,

sisterslk@... writes:

<<

Yeah, o.k., come on out of the dog house. But if you

ever do get up here, we will have to do some book

shopping!

>>

Boy Sharon, I think that would be a scarey thought. LOL Do you think we'd

ever come out????LOL I bet we would sure have fun.!!! I hope we can do it

some day soon.

hugs

[Guest guest]

--- RCColloran@... wrote:

> Hi Sharon, well , I didn't make it to the used book

> store today, so am I out

> of the dog house? LOL But I did send my daughters.

> LOL They only came back

> with one book. I'm like you, I usually have a big

> bag full then I don't have

> to go and spend money every day (which would be

> easy for me to do there.)

>

> I'm so glad that you got to see your grandbabies.

> Makeila bought Papa a

> " Ken " doll last Father's Day. Well, now he can play

> too. LOL She picked it

> out herself because she wanted PaPa to play with us

> too. As you can see

> she's a Papa's girl. lOl Wish I had more. I'm in

> the mood for a baby. But

> guess I'll have to be patient and wait a few more

> years. LOL

>

> Hope you are resting today and feeling rejuvenated

> by the little ones.

>

> hugs.

>

>

Hi ,

I love hearing about these papa's that can play

dolly's and Barbies with their granddaughters. Isn't

that great?

Yeah, o.k., come on out of the dog house. But if you

ever do get up here, we will have to do some book

shopping!

BTW, I did not get the newsletter yet. No hurry, just

wanted to let you know.

Take care, and keep reading. Love, Sharon

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[Guest guest]

Sharon, I'm so glad that the Remicade is working. Doesn't it feel wonderful

to know you are making head way? I have been feeling really good as far as

the RP is concerned. The fibro is showing it's ugly face, but it always does

this time of year.

Keep up the good work and PLEASE don't be afraid to tell us good news. A lot

of members don't want to share good news for fear we might feel bad. Heck, I

LOVE to hear stories that have a happy ending... it gives us all more hope.

hugs

[Guest guest]

Sharon

What would I do without you! You got that right about the who part!LOL

Hope you are feeling well.

Lots of love

Glenda

That would probably depend on who was getting themassage! Hope you are feeling better, Glenda. Love, Sharon

[Guest guest]

In a message dated 2/21/02 5:24:22 PM Pacific Standard Time,

sisterslk@... writes:

<< Why not throw in another good day tomorrow, >>

Sharon, I'm all for it. In fact let's throw in another good month!!!

hugs

[Guest guest]

Yeah is right Sharon! This weather here is too weird. It is true about wait 5 minutes it will change!LOL Especially the last few days. One of the ladies at work said all she had to do was look out another window in her house and see a different kind of weather.LOL

Take care and have a great weekend!

Lots of love

Glenda

We have a saying, "ifyou don't like the weather, wait five minutes and itwill change". We had more snow this morning, which isjust unheard of at this time of year. Didn't stickagain. Hear the big "YEAH" from Glenda and me?Hope you are doing well, ! Have a great day.Love, Sharon

[Guest guest]

--- Lee27a@... wrote:

..  From what I've been

> reading, this particular medicine is not a cure for

> RP.  Am I missing

> something here?  

Love,  Sharon

Good Morning Sharon,

I have never been treated with that medication, so I

don't know anything about it. There is no cure for RP

currently, but it can be controlled once you are on

the right medications for you. To me, this is very

frustrating because although we all have the same

disease, we all respond differently to the med's used

to control it. Did your doctor start you on

prednisone? That seems to be the " gold standard " to

get the inflammation under control. Then the doc's

usually begin adding in some form of prednisone

sparing drugs-DMARDS or immunosuppressants.

If your flu symptoms don't end soon, you should

probably call your doctor just to be cautious.

Hope you feel better soon. Love, squeek (aka Sharon

from OR)

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[Guest guest]

In a message dated 4/8/02 12:11:12 PM Pacific Daylight Time, Lee27a@...

writes:

<<

I absoluetly dislike every doctor walking around. I have called my

>>

Oh Sharon I can bet that most all of us have felt like you are today. It is

all so frustrating. Not only the doctors but the insurance companies.

You just go ahead and scream. I find the best place is in the shower. LOL

I have looked .. I mean been on a mission for years and finally found a group

of drs to work with . They are wonderful, but my insurance changes in Nove

and i will no longer be able to see them. So. My search will continue. It

is not a fun job and at times you just want to give up. But somehow, we are

guided to the right dr. I will keep you in my thoughts. Please vent all you

want and PLEASE let us know what you find out.

sending lots of hugs

[Guest guest]

Judy is right! Go ahead and scream....or just keep

posting to the group. We have all been in these

situations, I think. As to getting a good

doctor....it took me over six years! Believe me I did

my share of screaming before I got him. Hope you get

some news soon. There is nothing worse than

uncertainty. Hang in there, squeek

--- Lee27a@... wrote:

> I absoluetly dislike every doctor walking around. I

> have called my

> Neurologist and Rheumy about the MRI I took on

> Friday regarding the left side

> of my face. They are supposed to get back to me

> but they don't! One is on

> vacation and the other one is probably eating peanut

> butter in a corner. I

> am so mad! How do you guys come up with such decent

> doctors? I am so very

> concerned about what's going on with me and they

> have to make me WAIT!!

> Sorry I feel like screaming.

>

>

>

> Thanks, Sharon

>

>

>

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[Guest guest]

--- Lee27a@... wrote:

>

>

> I just lost my father on Jan 1 this year. My mom 13

> monts prior. Since

> Jan.1 I have been dx with relapsing polychondritis

> (which keeps flaring) and

> trigeminal neuropathy. It's been really hard on me

> and to make matters worse,

> my siblings have never helped but are causing me

> much grief about my father's

> trust and will which is causing me more anguish.

> It's not enough to lose a

> loved one that I was caring for??? They have to do

> this to me too???? Who

> said life was fair. I know I have to lean on the

> Lord more for help and stop

> getting angry about everything.

>

>

> Love, Sharon

>

>

Sharon, so sorry about what you are dealing with right

now regarding your siblings, the loss of your parents,

and the dx of RP. That is enough to make anyone

angry. You have certainly earned the right to vent,

and this is a safe place to do it. I also cared for

both of my parents before their deaths, and that does

make losing them even harder I think! Take care and I

will add you to my prayer list. Love, squeek

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