Re: /update

[Guest guest]

Dear ,

what an awful way to find out that you were not getting the injection. I

know how much you looked forward to this and I think we are all

excited for you when you receive one because of the horrible pain that you

have dealt with for so long. I totally agree, that your doctor should make

this up to you, and just leaving without giving you notice about your

injection is very rude also. I feel so bad when I was talking so highly

about my rheumy yesterday, and I am still hearing of so many people having a

problem here with their own doctors, and believe me, I do share in your

feelings about not respecting them after a while. It really took me so long

and so many years to finally have someone so wonderful. I think it will be

good to possibly find someone new . I agree, and I too had to go out

of state a few times. It seems to be a hassle, but if you can find someone

to take on Stills, it is well worth it. I hope that you will have some luck

with this. I was very glad to hear that your new boss at work seems much

more understanding, and it says something about you , when you miss a

day at work and you make it right up on another. You should, and she should

... be very proud of you, and your boss should be able to see what a good

person and worker that you are. Some people won't do this at all. I can

see that you are very determined and like me, I know how important work is

to you and you seem so talented. I know how badly you would love to

get your own business off the ground. , you said that " you need to try

harder " , I don't feel that this is the problem sweetie. I can understand

your feelings go much, but there is a point when we must stop being so hard

on ourselves. I am really starting to learn to let my employees help me out

at work. They see the pain that I am in, but they also see the effort that

I put forth also. You are like me in every way . You're doing a

wonderful job, but we just have something holding us back. You know how

hard you work and others see it too, don't be so tough on yourself. I

am glad that you are doing some work around the condo. It always seems at

this time of the year, I am ready to paint and make changes. I guess

because the weather tends to keep us in doors more, and I hate looking at

the old paint and dirty carpets. I am having wood floors put in while I am

in Vegas and I was going to try to put a fresh coat of paint on the walls

before I go, but my arm with the sores...will not let me. I swear, it's

getting worse. After getting the paint at the store today, I was carrying

it out the door and dropped it. I couldn't hold onto it for anything. I

think the infection is working its way into my upper arm. URGHH! Making

new changes is always good and it always gives you something to look forward

too. Let me know how it turns out. I love you friend and I hope this

injection comes soon for your back. You deserve the break and he owes you I

feel. I am glad that he admitted that he didn't think it was in the same

area either. That's a good start and maybe it will be easier to talk to him

with the next injection. Be well .

Love, Sue #2

-- Update

Hello All,

I have been so up and down emotionally lately. So far I am having an up

day. I was quite disappointed that I didn't get to have my Epidural

Injection yesterday. I have to wait a week or longer. My Doc said he was

out of the medicine. I would think he would have been prepared he knew I

needed another Injection a month a go. I wish he would have told me before

I came to my appointment. I was really looking forward to it.

This is the same Doc who totally disregarded my first appointment with him

to get my first Epidural Injection. He knew I had an appointment but

because he had family visiting him he left his office early. He never told

me. I was 5 minutes late and he was closing up his office. I usually have

to wait 2 hours past my appointment time to see him. The Epidural would

have taken 45 minutes because you have to wait half an hour after the

Injection to make sure you are alright. So not seeing me because I was 5

minutes late was B.S. Pardon my French.

I was right the Doc said that the last Epidural Injection he gave me he

didn't feel he injected me in the right spot. I am hoping he will let me

have 4 of these Injections in a row because of this. Especially if my next

one doesn't last longer then a month. Your allowed to have 4 of these a

year. I would think that this is the least he can do since he didn't inject

me in the right spot. He usually gives you 3 in a row and one later on in

the year if needed.

So I have now been let down by this Doc. 3x. It really infuriates me. Of

course I have to conceal my feelings because he is probably the only Doc. I

can see for Pain Management. The last thing I want to do is upset him. He

acts like nothing ever happened. This is why I have so little trust for

these Doc's.

Unfortunately all of these Doc. disappointments and let downs are making me

become bitter towards most Doc's. These things definitely affect my life.

Oh well I better switch subjects before I go into one of my long venting

tangents. All of you are probably tired of hearing about my Doc. woes.

I am going to start looking for a better Rheum. Doc. it won't be easy

because I have to go out of state. There are only 2 Rheum. Doc's in AK. I

will be going to Seattle to find another Rheum. Doc. I have always received

good Medical care there. If anyone has a good Doc. in that area let me

know. I can't seem to locate the Rheum. Doc I was last seeing before I

moved to AK. His practice was in Everett which is not that far from

Seattle. His name was Dr. Bandy.

On a better note I feel real lucky that my newest boss at work is being very

accommodating regarding my absences at work. She has been letting me make

them up on another day in the week. I have been really slipping and having

too many absences. I had a good talk with her I asked her to give me a

warning before firing me for my absences. This has taken a lot of stress

off of me. Every absence I would have I would worry that I would be fired.

I am really looking forward to my next Epidural Injection and excited about

starting Kineret. Hopefully I can get my disease under better control. My

stomach problems are still quite a problem but I am working on this.

I am trying very hard to lose some weight. I am the heaviest I have ever

been and this really bothers me. I think at least 5lbs maybe more can be

attributed to my stomach problems.

Me and my husband have finally starting fixing up are little Condo. We need

to fix it up and sell it and buy a bigger place. I have cabin fever I just

can't stay in this little place much longer.

I have slowly started to work on my dream again. I would love to have my

own successful home based on line business. I also am slowly updating my

computer skills in hopes that I will eventually get a promotion at work. My

absences are definitely holding me back. If it were not for my absences I

probably would have moved up already.

I need to try harder and no matter what go into work. It is just so hard at

times. The other day my back was really hurting, other joints too, I had

awful stomach pains, a headache I couldn't get rid of and I was exhausted.

So I stayed home from work.

For awhile I haven't enjoyed things that I usually do. Hopefully I am

slowly getting my ambition back so I can again start enjoying things in my

life more. All in all things are looking up. I have a lot to look forward

to. I know I can sound so negative at times but I do know I have a lot of

things to be grateful for. This definitely includes this group.

Thanks for listening. I wish everyone a wonderful day.

Love,

jatw@...

[Guest guest]

Becki:It just goes to show what a Mom can accomplish! I am so glad that you were persistent in pursuing the Enbrel! is certainly a lucky little boy to have you for his mother. We are so thrilled that is doing so well. He has made not just steps but leaps and bounds in his recovery. We hope that old Arthur has packed up and left forever.

Love, and Rob 13 JAS

On Wed, 16 Apr 2003 22:43:16 EDT Arthurnator@... writes:

Hi everyone, I hope everyone is enjoying the warm wheather of spring.It's only been a about 4-6 weeks since I updated about but this has been a very important ,key time in our lives.Some of you know our saga others don't.It has been a full 2 months off the steroids and the Ibuprofin taper has gone well. has gone from 800mg a day down to 300mg if we don't forget a dose.He is 100%, 100% of the time.Last year at this time we were running out of options.My 3 yr old was maxed out on 25mg MTX sub -que and Enbrel was still so FAR away.We tried Plaquenil but no real responce,we did cortisol joint injections,but had to redo 1 month later. got casted for 2 weeks then was weaned off a brace for another 3 weeks.Finally Sept of last year I read about an Embrel trial for systemic children. didn't qualify for it but did qualify for the 3 yr safety study.We went for it and its worth the 300+ miles one way every 3 months.After being on the waiting list for 9 months and reading about all the older kids going to Remicade it was like a ray of sunshine,hope for things to come.We were told right off the bat not to expect the same results that some Poly kids achieve,that the key bad guy with systemic was Interluken 6. seems to be an exception,at his March appoitment he was treated like a king.They were shocked and amazed,but very exilerated.s rheumy at Vandy is supposed to have full charge of his meds,yet DR.Lovell was like "Do you need any refills"then onto "way to much Ibuprofin,he doesn't need this much" is in a very STRONG state of medicated remission but all the woes and worries are far from over.Come June it will be 6 months symptom free so that means tapering the hard stuff.I don't know exactly how the rheumies feal but I sure know how I feal about it.There will probably be a conflict of interists.Quite a mini novel I have written here,I used to be known as the queen of rambling.In closing continues to lose weight quite rapidly and his height has jumped to the 75% for a boy his age.Uncle Rusty in Rusty room is hoarding pictures and keeping most to himself.I desperately need a scanner.I just love to see the photos of all our little and big JRA warriors. has changed so much since just Sept of last year.Just keep hopeing and keep the faith.This is intended more for the scared moms to come,but I still remember fealing a sence of hope reading about other children doing so well.I wish the best for everyone, and for those that don't remember me from last summer the beautiful lightening bugs hold a special meaning for me and all your children.So much more to say but enough is enough. Love and Hugs Becki and 4systemic To leave this mailing list, send request to: -unsubscribe

[Guest guest]

Hi Everyone,

I appoligize for this post going through so many times.On my end it wouldn't go through at all,it kept saying something was taking to long then it just locked up on me.It never did come back and say mail has been sent.Luckily I am getting a new non stupid computer as soon as it's ready.Thank you for bearing with me and my old computer.

Hugs

Becki and 4systemic

[Guest guest]

Hi ,

I hope he stays away forever too.That is kind of why it was such a long emotional post.I keep day dreaming while awake and dreaming while asleep.I can't get the vision of tapering off all his meds out of my head.I know it's crazy and very unlikely.So I just needed to let loose of alot of fealings to try and regain some sort of rational thought.Arthur could just come back for no logical reason or just 1 nasty virus or bacterial infection could send over the edge.I miss the way the JRA list used to be.I don't miss s bad times but I do miss the friendships and bonding I made with all the wonderful people that helped me along the way.You remember how the JRA list used to be a great big Rusty room.Heck thats why Rusty did it in the first place,just to much posting for most people.I hope is fealing better.It's very hard watching your child doing something they should be able to do only to pay dearly for it.

Love and Hugs

Becki and 4systemic

[Guest guest]

Becki-

I'm so happy to hear is still doing so well. I hope it continues . . . forever.

Diane (, 4, pauci)

[Guest guest]

Hi Val,

Glad to hear Robbie and the steroid taper is going so well.The labs is such excellant news.I guess they are getting his Cyclosporine levels back where they should be.I sure hope they never let that happen again.Our June appointment should be fine.I just worry a little because s friend Ashly has to come off the MTX due to to many very high liver enzymes and she told me when they taper they won't up it until the fevers.No way,no how are they going to do that to .If he starts having obvious arthritis in his joints he is going back up until nothing again.I will not let them push him into a full flare.To me thats just crazy.I can't really compare to Ashly though.I just have my own opinions on how I want him tapered.

Keep the shovel around for a little while longer,we still have blackberry winter to go through.Our dogwood winter was two weeks ago and it snowed down here in Tn two days after a tie for the record high of 78.

Keep updating on Robbie and hopefully this year we wont be dwelling about certain dates from 2 years ago.The dates that stick in my head now is hasn't had a fever since Dec2001 and I haven't seen the rash since April of last year,but last April was a doozy of a flare,just no fever.

Glad Robbie had such a GREAT Easter,he sure deserved it.

Lots of Love

Becki and 4systemic

[Guest guest]

Hi Becki,

This time last year I remember feeling bad because Rob was doing so well on his

taper, and was having so many struggles. I am so glad that the Enbrel has

done so much for your adorable little guy! I pray that things continue so well!

I know that June looming ahead can be intimidating - but I know you will trust

your instincts when you discuss all of this with the physicians and work it out.

(They should know who they are dealing with by then, shouldn't they?)

Rob is continuing to do well on his taper - his last labs looked great, the wbc

and sed rate both normal (I get confused reading normal readings!)We are

tapering his steriods 1.5 mg every two weeks now - until we get to 10 mg - then

recalc the taper rate. He is currently at 16.5 mg every day.

I hope you guys had a nice Easter - Robbie really enjoyed his egg hunt! I am

so, so grateful for Spring!!!! Though I noticed I still have my snow shovel

leaning on the back deck - I must be still bracing myself! (I guess I can put

that away - though it wasn't too long ago that I needed it!)

I hope you are doing well, and not hating your job too much. Carry on, Ma'am.

Val

Rob's Mom (5,systemic)

In a message dated 4/16/2003 9:43:16 PM Eastern Standard Time,

Arthurnator@... writes:

> Hi everyone,

> I hope everyone is enjoying the warm wheather of spring.It's only been a about

4-6 weeks since I updated about but this has been a very important ,key

time in our lives.Some of you know our saga others don't.It has been a full 2

months off the steroids and the Ibuprofin taper has gone well. has gone

from 800mg a day down to 300mg if we don't forget a dose.He is 100%, 100% of the

time.Last year at this time we were running out of options.My 3 yr old was maxed

out on 25mg MTX sub -que and Enbrel was still so FAR away.We tried Plaquenil but

no real responce,we did cortisol joint injections,but had to redo 1 month

later. got casted for 2 weeks then was weaned off a brace for another 3

weeks.Finally Sept of last year I read about an Embrel trial for systemic

children. didn't qualify for it but did qualify for the 3 yr safety

study.We went for it and its worth the 300+ miles one way every 3 months.After

being on the waiting list for 9 months and reading about all the older kids

going to Remicade it was like a ray of sunshine,hope for things to come.We were

told right off the bat not to expect the same results that some Poly kids

achieve,that the key bad guy with systemic was Interluken 6. seems to be an

exception,at his March appoitment he was treated like a king.They were shocked

and amazed,but very exilerated.s rheumy at Vandy is supposed to have full

charge of his meds,yet DR.Lovell was like " Do you need any refills " then onto

" way to much Ibuprofin,he doesn't need this much " is in a very STRONG state

of medicated remission but all the woes and worries are far from over.Come June

it will be 6 months symptom free so that means tapering the hard stuff.I don't

know exactly how the rheumies feal but I sure know how I feal about it.There

will probably be a conflict of interists.Quite a mini novel I have written

here,I used to be known as the queen of rambling.In closing continues to

lose weight quite rapidly and his height has jumped to the 75% for a boy his

age.Uncle Rusty in Rusty room is hoarding pictures and keeping most to himself.I

desperately need a scanner.I just love to see the photos of all our little and

big JRA warriors. has changed so much since just Sept of last year.Just

keep hopeing and keep the faith.This is intended more for the scared moms to

come,but I still remember fealing a sence of hope reading about other children

doing so well.I wish the best for everyone, and for those that don't remember me

from last summer the beautiful lightening bugs hold a special meaning for me and

all your children.So much more to say but enough is enough.

> Love and Hugs

> Becki and 4systemic

>

[Guest guest]

Hi Becki!

We must have had snow the same time - I know we had one after a recent record

high. Strange weather - but nice today. It is hard to believe it has been two

years, but in other ways it seems like it has been much longer.... I would be

cautious with the taper too, not let a full blown flare erupt if preventable.

(As tricky as predicting the weather.) Robbie's worse rash was during his most

recent flare in December. I guess those dates are the ones sticking with me

right now. That and his strange fever two weeks ago - he never had a fever that

high last just one day and not resurface. Must have been some sort virus.

Take care - we are thinking of you guys!

Love,

Val

In a message dated 4/21/2003 3:20:36 PM Eastern Standard Time,

Arthurnator@... writes:

> Hi Val,

> Glad to hear Robbie and the steroid taper is going so well.The labs is such

excellant news.I guess they are getting his Cyclosporine levels back where they

should be.I sure hope they never let that happen again.Our June appointment

should be fine.I just worry a little because s friend Ashly has to come off

the MTX due to to many very high liver enzymes and she told me when they taper

they won't up it until the fevers.No way,no how are they going to do that to

.If he starts having obvious arthritis in his joints he is going back up

until nothing again.I will not let them push him into a full flare.To me thats

just crazy.I can't really compare to Ashly though.I just have my own

opinions on how I want him tapered.

> Keep the shovel around for a little while longer,we still have blackberry

winter to go through.Our dogwood winter was two weeks ago and it snowed down

here in Tn two days after a tie for the record high of 78.

> Keep updating on Robbie and hopefully this year we wont be dwelling about

certain dates from 2 years ago.The dates that stick in my head now is

hasn't had a fever since Dec2001 and I haven't seen the rash since April of last

year,but last April was a doozy of a flare,just no fever.

> Glad Robbie had such a GREAT Easter,he sure deserved it.

> Lots of Love

> Becki and 4systemic

>

[Guest guest]

Dear ,

I have experienced this, and I am experiencing it now with my left shoulder.

My left arm is definitely weaker, and I just had 3 cortisone shots recently

in my left shoulder. The first 48 hours were horrible with pain, but after

a few days, it was really wonderful. I noticed a huge difference. As for

the last few days, it is starting all over again. I really thought that it

was going to work, but now I have my doubts. I hope that I never have

problems with my other shoulder or hand, since I am right handed. How is

your pain now? Have your rheumy give you an x-ray for that shoulder if

he/she can. Be well friend.

Love, Sue #2

-- Update

Hi all. I wanted to let everyone know that I got a computer at home this

weekend. Yeah... lol my new address at home is

Kelleyak32@.... Had a pretty bad weekend with pain. Still trying to

hang in there though. I feel that I am loosing a lot of strenght in my

right arm and shoulder. Has anyone else felt this? It felts kind of

tight, almost numb but it's not numb, does this make any sense. I had a

hard time drying my hair this morning. I wanted to be able to come to

work to see my emails from the group, sad huh, lol.. Kelley in Colorado

Kelley Knight

1400 E Boulder St

Colo Spgs, CO 80909

719-365-1154

719-365-6834 fax

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[Guest guest]

Hi, Pam.

I am so happy to hear that Rebekah is doing so well! I love to hear these

stories.

To answer your question, it took about 1 year to get her energy back and 1 year

to get the rest of her " quality of life " back. Like Rebekah, my Dani does not

have the energy level of her peers but she is sooo much better than before. I

try to compare Dani to herself and not others, but it is hard not to. = )

I know that I sound like a broken record but have you considered SCIG? It might

prevent that awful bone tired stuff that kicks in after the 7th or so day of

IVIG.

Take care,

mom to CVIDer