Kim

[Guest guest]

Kim, yes I'll try it that way, thanks.

s neutrophil count has always been on the low end of normal. In saying

low end of normal, I'm talking a few points within range, ie 1.5 (1.0 - 8.5),

although it has been lower, on a consistent basis. Maybe this is ok, I dont

know. But as it doesnt vary with infection I wonder, esp when the lymphacytes

are similiar except for the odd times they have been out of range (ie 0.6

(1.5-9.5) ). This too may be normal and nothing to worry over, its what I am

trying to work out. As always , if anyone wants to help out, feel free! : )

, how is doing?

[Guest guest]

Oh Sue #2

You have every right to complain...your situation is equally as bad as

mine...for you! Everyone needs to vent. I get worried when I don't see you

post for a while. I hope things are going well for you. I miss hearing from

you. Please let me know how you're doing. I don't think I get all the posts.

Much love...thanks once again for all your kindness, Kim

" A. Matera " wrote: Kim

thank you so much for being so kind........you are a great friend and I have no

reason to whine after seeing your email. I am truly sorry Kim for the

pregnancies and the loss of your babies...my heart ached when I read that....I

definitely have no reason to complain. I should consider myself extremely lucky

right now and shut my mouth.......so many people have it so much harder than

I.......besides this horrible disease, my life is wonderful........God Kim, I am

glad that you found us......we are lucky to have you as a friend. I too,

developed clamsia Kim...I had it with my second birth and he was born emergency

c...we will have to talk when you are ready.........much hugs to you special

friend.

Love, Sue #2

[Guest guest]

Sue#2

Thank you so much for sharing your experience and I'm glad you did because I

kept wondering and frankly...getting upset that your Rheumy wasn't trying MTX or

doing something more for you. I really was. So, I'm glad to hear his reasoning

and you're right it does make sense. Your body does need time to heal.

Dr. Fu...I have tried to have a discusion with him about seeing Dr. Cush and him

as a " team " he cut me off...there is absolutly NO way he is willing to do that.

He knows who Dr. Cush is and has even met him before. It may be a cultural

thing...respect...he's Asian...I don't know that it's a cultural thing and maybe

someone in the group that is Asian can shed some light on this but I do know

that different cultures think differently about these types of things. He CUT

me off and made it very clear that it was not an option. Dr. Cush is supposed

to call me back next week with the name of a doctor in my area that he thinks

will work with him. So, I will set up an appointment with that doctor and in

the mean time (because you know....it could be months before I can get in to see

this other doctor) I will use Dr. Fu and just not mention Dr. Cush to him.

That's my plan at the present...what do you think? My primary care physician

helped me with that one...he's so good to me. Here he was the only doctor in

the office on Thursday and backed way up...he was getting paperwork done and

didn't even get a chance to call me back until 11:30 that night. He helped me

sort through all my options. He's talked to Dr. Fu and likes him but

understands that if you have the best in your disease....and other

options...that I should consider them.

Anyway that's where I am with that???? Something will work out...

Love, Kim

---------------------------------

[Guest guest]

Sue#2

Thank you so much for sharing your experience and I'm glad you did because I

kept wondering and frankly...getting upset that your Rheumy wasn't trying MTX or

doing something more for you. I really was. So, I'm glad to hear his reasoning

and you're right it does make sense. Your body does need time to heal.

Dr. Fu...I have tried to have a discusion with him about seeing Dr. Cush and him

as a " team " he cut me off...there is absolutly NO way he is willing to do that.

He knows who Dr. Cush is and has even met him before. It may be a cultural

thing...respect...he's Asian...I don't know that it's a cultural thing and maybe

someone in the group that is Asian can shed some light on this but I do know

that different cultures think differently about these types of things. He CUT

me off and made it very clear that it was not an option. Dr. Cush is supposed

to call me back next week with the name of a doctor in my area that he thinks

will work with him. So, I will set up an appointment with that doctor and in

the mean time (because you know....it could be months before I can get in to see

this other doctor) I will use Dr. Fu and just not mention Dr. Cush to him.

That's my plan at the present...what do you think? My primary care physician

helped me with that one...he's so good to me. Here he was the only doctor in

the office on Thursday and backed way up...he was getting paperwork done and

didn't even get a chance to call me back until 11:30 that night. He helped me

sort through all my options. He's talked to Dr. Fu and likes him but

understands that if you have the best in your disease....and other

options...that I should consider them.

Anyway that's where I am with that???? Something will work out...

Love, Kim

---------------------------------

[Guest guest]

Dear Kim,

I would do that friend, yes....keep Dr. Fu until Dr. Cush suggest someone new

and get you set up with that doctor. What an ordeal huh? Why most something be

so difficult for something so serious as our health, which is so precious and

important to us? I just don't understand it. I don't know about the cultural

thing Kim. My doctor is from India and he hasn't shown any cultural influence

at least to me, but I am sure that it exists. I haven't mentioned Dr. Cush to

him yet, but when I do, I will be curious of his reactions, so this will be

interesting. I didn't know that my Rheumy was very aware of Stills. In the

beginning, I thought that it was very clear that he had NO knowledge of it, but

he wasn't fully communicating with me, and the more we talked, he let me know

that he is well informed with Stills and has had one patient with it and I am

his second, but let me know that he is well up on Dr. Cush and treatments, so

this made me feel better, and I found out that his partner is actually the

doctor who came to see me in the hospital and spent an hour with me and

questioned me about my sickness...in fact, this is the doctor who said that he

thought that I indeed had Stills, so you see, the more I got to know my doctor

and communicated openly with him, more doors and options started to appear, and

this has made a world of difference in my patient/doctor relationship with

him....in fact, my boyfriend actually just helped him and his family move to new

home and it was kind of neat, because Bob really laid it into him about how I

am, what it is like living with me and seeing my body so drastically change so

fast. My doc had no choice because he had to ride in the moving truck with him

to and from his new home for an hour and a half...so Bob had him " cornered " sort

of speak.....this definitely worked out to my advantage....lol......love you

Kim.

Love, Sue #2

[Guest guest]

Kim,

I feel that your letter was just fine and I don't feel that you were pushing Dr.

Cush in any shape or form and you offended me in now way. I like listening to

others experiences whether they are negative or positive, because either way,

these are learning experiences for me and I learn from everyone. I don't

remember who it was who suggested to me, not to run in and " yell " at my Rheumy,

but I was ready to, but the advice that she gave me will stick with me forever

and I was really thankful for her talk and concerns about my appointment because

of her own mistake of yelling at her doctor on the phone. She really helped me

out a lot and because of her, I now have a great relationship with my Rheumy,

that I might not have had and I could of ruined. Kim, we all know how caring

and thoughtful you are, and I feel that you were being helpful. Just my

thoughts.

Love. sue #2

[Guest guest]

Thank you Traci...you see...because you are not as emotionally involved in my

situation as I am...because I'm in the middle of it...you see things I can't see

so clearly. That is exactly the kind of help I was seeking and received.

See...you got it as did many others....I give you all a lot of well deserved

credit!

Traci, when you post I hope you won't feel those feelings we feel. Your

situation is significant to you no matter how serious your condition is compared

to anyone else's....If you need support...that's what we're here for. Not to

judge your condition. I think it's natural/normal to feel the way you do

though...it's human nature at its finest. Its actually a beautiful quality...I

would rather be like you than having an overdeveloped since of entitlement.

You’re a beautiful person.

Someone I was chatting with once asked me how many friends I had that weren't

online friends. I have many, I replied...why? Answer: no reason... Then I

thought about it and some of my very best friends are the ones I've met online.

Some I have been fortunate enough to meet and other I haven't. As a matter of

fact I have a whole second family online (You ALL) and I haven't met one of you

yet! Wow, what a great tool we've been blessed with...this Internet and this

group combo. A BIG BIG BIG something to smile about on a Monday morning.

Really…good night now…

Much Love, Kim

PS..I guess nobody wants to diet with me..I don’t blame you…it’s no fun. So, do

I eat 6 Low-Fat Vienna Finger cookies or 2 ewy gewy hot chocolate chip cookies

that I pop in the oven for a few min. Yep, at 2:30 am…no wonder I’ve gained so

much weight. That prednisone’s a killer huh?

---------------------------------

[Guest guest]

Dear Traci:

You're so sweet. I know you don't send e-card to get a thank you, but I think

it's the right thing to do to at least acknowledge that I've received it. It

was so kind of you to think of me. I am always shocked when someone thinks of

me or notices that I'm not here. It makes me feel special and warm...like I

have an unconditional bond with all of you here at Silligan's Island.

You mentioned that you don't have access to long distance phone calling, but you

too can use the phone card to call anyone. Here's the link in case you didn't

get it...

http://www.kimdaves.com/aosd.htm

Hope this will help you some day when you're in need.

Love and Hugs, Kim

imasthrngirl wrote: Kim, don't worry your pretty

little head about sending me a thank you

for those e-cards. That is not why I send them. I send them because I

think they and the people I send them to are special, and I hope they

can add a little sunshine to the dark days you are suffering through.

Believe me, I know how it is to just feel so bad that it takes all

you can do just to get out of bed. I have a 27 month old boy and if

it weren't for him needing to be taken care of, I probably would have

spent the last six months in bed. This has been the hardest six

months of my life, (other than when I lost custody of my angel) and

if it weren't for Logan and Britani, I might have just " thrown in the

towel " somewhere along the way. And of course, all of you here at

Stilligan's Island have been of tremendous support as well.

Anyway, get some rest dear, and get well. Let me know if I can do

anything for you, ok? If you feel like talking (or anyone) my home

number is . I do not have access to long distance, so I

cannot make a long distance call, but anytime you want or need to

talk I am usually here.

Hugs and smiles to you and all... Traci