Re: fall part two

December 22, 2003

Poor Joe, I sure hope she starts feeling better. Its just not fair to have to be sick and be a teenager at the same time.. or a child.. or an adult.. ok just being sick is down right not fair. I'll be keeping her in my prayers and hoping that she starts feeling better at least for her birthday. And e I hope that your days start looking brighter..im sure its not easy to watch her suffer like that. Best of luck.

(jra and spondy19)

December 22, 2003

Poor joe!! And hugs to you as well e. I don't blame her one bit

for not feeling in the Christmas spirit - hopefully things will settle

down a bit over the next few days so she can enjoy the day. And keep her

mind on that 17th Bday that's coming! I hope you get an answer soon and

there is something to treat. You are in my thoughts, Michele

(16,pauci & spondy)

fall part two

Okay, here I go again. Beware....The rheumy upped the steroids and

when I talked to him I was not at home but thought we had quite a few

and if not could just order the refill. Well, of course, she only had

enough for one day and no refills! I paged the rheumy throughout the

day with no response. I went to the pharmacy to beg that they get me

through the weekend when we could get in touch with the doctor. Well,

thankfully they agreed and sent a fax for the refill. BUT here comes

the really bad part, something is wrong with our insurance. I had a

ton of meds to pick up. Mine went through without a problem but hers

and my sons did not. They rang them up and I about passed out. I

don't know how anyone buys meds without a prescription!!!! So, I

couldn't pick up any of her meds so we making due until Monday. I

hope it is something easy to fix because of the Christmas holiday.

Our HMO is a pain to deal with.

So, how is joe? Horrible. Her joints are all hurting with various

levels of swelling. I went to give her the Enbrel and MTX injecetions

and she just started sobbing uncontrollably. The injections were

really painful because she couldn't hold still. Her little brother

came up and held her hand and kept repeating " it's okay " (very

sweet). I finally got her to bed with her kitties and a soothing CD

in her player, but she was still sobbing. I'm beginning to hate

December. This is her third December with JRA and each one has been

horrible where we have upped her meds and she has been an emotional

wreck. Between the steroids and the reality that this stinking

disease and is out and running hard, she is having a really hard time

(to put it mildly). She doesn't care one bit about Christmas and her

birthday coming up. There isn't one gift that she can receive that

will make her happy. The only gift she wants is the one we all want,

the impossible dream. Perhaps her labs will come back tomorrow with

evidence of an underlying infection that we can treat and she will be

feeling better soon. I can dream.

Again, thanks for listening. It is extremely hard to talk to someone

about this who doesn't understand. They can not fathom what these

kids go through (and their parents too). And honestly I think they

get tired of hearing it. Well, these kids get tired of living it!

e,

December 22, 2003

Hi,

Oh, e. I am so sorry for all that you are having to deal with on

a day to day basis. And, of course, for Joe. I'm sorry her arthritis is

still flaring. This is so hard, particularly around this time of year. I

never thought I'd be writing in saying that I hope someone's labs show

presence of an infection but the way you put it, if there is and it can

be treated and then she'll start feeling better soon afterwards ...

well, I'll just wish that good things start happening. Soon.

Take Care,

Georgina

boundforlondon wrote:

> Okay, here I go again. Beware....The rheumy upped the steroids and

> when I talked to him I was not at home but thought we had quite a few

> and if not could just order the refill. Well, of course, she only had

> enough for one day and no refills! I paged the rheumy throughout the

> day with no response. I went to the pharmacy to beg that they get me

> through the weekend when we could get in touch with the doctor. Well,

> thankfully they agreed and sent a fax for the refill. BUT here comes

> the really bad part, something is wrong with our insurance. I had a

> ton of meds to pick up. Mine went through without a problem but hers

> and my sons did not. They rang them up and I about passed out. I

> don't know how anyone buys meds without a prescription!!!! So, I

> couldn't pick up any of her meds so we making due until Monday. I

> hope it is something easy to fix because of the Christmas holiday.

> Our HMO is a pain to deal with.

>

> So, how is joe? Horrible. Her joints are all hurting with various

> levels of swelling. I went to give her the Enbrel and MTX injecetions

> and she just started sobbing uncontrollably. The injections were

> really painful because she couldn't hold still. Her little brother

> came up and held her hand and kept repeating " it's okay " (very

> sweet). I finally got her to bed with her kitties and a soothing CD

> in her player, but she was still sobbing. I'm beginning to hate

> December. This is her third December with JRA and each one has been

> horrible where we have upped her meds and she has been an emotional

> wreck. Between the steroids and the reality that this stinking

> disease and is out and running hard, she is having a really hard time

> (to put it mildly). She doesn't care one bit about Christmas and her

> birthday coming up. There isn't one gift that she can receive that

> will make her happy. The only gift she wants is the one we all want,

> the impossible dream. Perhaps her labs will come back tomorrow with

> evidence of an underlying infection that we can treat and she will be

> feeling better soon. I can dream.

>

> Again, thanks for listening. It is extremely hard to talk to someone

> about this who doesn't understand. They can not fathom what these

> kids go through (and their parents too). And honestly I think they

> get tired of hearing it. Well, these kids get tired of living it!

>

> e

December 24, 2003

Well, guess what her labs look great but she is still hurting like

crazy even with the increased pred. She got up about 3 a.m. last

night and put ice on her knee and took some more pain meds. I don't

know what to expect next. Poor kid. A family she babysits for swears

by a nutritional supplement and she is even thinking of taking that

(so unlike her but she just wants to feel more like her old self).

Hope Josh's wrist feels better soon. She was down to 3.5 on the pred

after 2.5 years of constantly being on them but she is back to 20 and

not much better. I'm not sure what to do next. Do we switch to the

Remicade or keep at it with the current routine. Hard to know which

is better. Just don't know how she will work in a long visit to the

clinic every few weeks.

e

> > Okay, here I go again. Beware....The rheumy upped the steroids

and

> > when I talked to him I was not at home but thought we had quite a

few

> > and if not could just order the refill. Well, of course, she only

had

> > enough for one day and no refills! I paged the rheumy throughout

the

> > day with no response. I went to the pharmacy to beg that they get

me

> > through the weekend when we could get in touch with the doctor.

Well,

> > thankfully they agreed and sent a fax for the refill. BUT here

comes

> > the really bad part, something is wrong with our insurance. I had

a

> > ton of meds to pick up. Mine went through without a problem but

hers

> > and my sons did not. They rang them up and I about passed out. I

> > don't know how anyone buys meds without a prescription!!!! So, I

> > couldn't pick up any of her meds so we making due until Monday. I

> > hope it is something easy to fix because of the Christmas

holiday.

> > Our HMO is a pain to deal with.

> >

> > So, how is joe? Horrible. Her joints are all hurting with various

> > levels of swelling. I went to give her the Enbrel and MTX

injecetions

> > and she just started sobbing uncontrollably. The injections were

> > really painful because she couldn't hold still. Her little

brother

> > came up and held her hand and kept repeating " it's okay " (very

> > sweet). I finally got her to bed with her kitties and a soothing

CD

> > in her player, but she was still sobbing. I'm beginning to hate

> > December. This is her third December with JRA and each one has

been

> > horrible where we have upped her meds and she has been an

emotional

> > wreck. Between the steroids and the reality that this stinking

> > disease and is out and running hard, she is having a really hard

time

> > (to put it mildly). She doesn't care one bit about Christmas and

her

> > birthday coming up. There isn't one gift that she can receive

that

> > will make her happy. The only gift she wants is the one we all

want,

> > the impossible dream. Perhaps her labs will come back tomorrow

with

> > evidence of an underlying infection that we can treat and she

will be

> > feeling better soon. I can dream.

> >

> > Again, thanks for listening. It is extremely hard to talk to

someone

> > about this who doesn't understand. They can not fathom what these

> > kids go through (and their parents too). And honestly I think

they

> > get tired of hearing it. Well, these kids get tired of living it!

> >

> > e

December 24, 2003

,

Thanks for the long distance hugs. We are hoping that tomorrow will

be a better day. she has taken 3 days of increased pred and so far

still hurting like crazy. Reminds me I need to look up the Ultram and

see if she can take it more than every 6 hours because it is not

holding her. She is supplementing with Tylenol along with her routine

Celebrex without much relief. Labs look good so don't know why she is

having so many troubles but she is one of those who has pretty good

sed rates no matter how crummy she feels. No evidence of underlying

infection. Bummer. She was hoping that she could get two weeks of

antibiotics and be feeling better in a couple days. It has helped so

many times in the past. She did ask if she could have some friends

over for her birthday so that was a good sign. She still hurts but

she said maybe it will keep her mind off of things. Sounds like is

slumber party time again!

e

> Poor joe!! And hugs to you as well e. I don't blame her one

bit

> for not feeling in the Christmas spirit - hopefully things will

settle

> down a bit over the next few days so she can enjoy the day. And

keep her

> mind on that 17th Bday that's coming! I hope you get an answer soon

and

> there is something to treat. You are in my thoughts, Michele

> (16,pauci & spondy)

>

> fall part two

>

> Okay, here I go again. Beware....The rheumy upped the steroids and

> when I talked to him I was not at home but thought we had quite a

few

> and if not could just order the refill. Well, of course, she only

had

> enough for one day and no refills! I paged the rheumy throughout

the

> day with no response. I went to the pharmacy to beg that they get

me

> through the weekend when we could get in touch with the doctor.