Re: a fall down the stairs

[Guest guest]

e,

I am so sorry to hear about your loss. My thoughts and prayers are with you and

your family. Special good wishes to Joe, it is so discouraging to have to go

back up on the steriods - tapering is such a hard process. Hang in there -

wishing all of you a cheering Christmas and a pain free holiday season.

Val

Rob's Mom (6,systemic)

In a message dated 12/20/2003 1:44:46 AM Eastern Standard Time, " boundforlondon "

<boundforlondon@...> writes:

>Okay, be prepared this is going to be a long one.LOL

>

>I spent last week out of state because my grandma had a massive

>heart attack. While I was there she passed away and we had her

>funeral. I forgot to ask someone to give my daughter her injections

>but was able to find a friend to come over and do it for her when

>she had both the MTX and Enbrel. But the big news is that she gave

>herself an injection of Enbrel. That was incedible for a girl so

>fearful of needles.

>

>When I flew in on Sunday she said she had been hurting. She was

>having a hard time walking at the airport. She has complained all

>week of joint pain, more than normal. Her knees are still stubborn

>and likely always will be. But this week it is complaints of ankle,

>hip, severe knee, wrist, and other complaints. No fever, no signs of

>infection but something definetly was up. Called the dr on Tuesday,

>nurse said he would call. No call back until I placed another call

>Thursday (sometimes they dont' seem to communicate too well)...He

>had a few ideas---labs to see what is happening, perhaps an

>underlying infection, possible pred burst, possible switch to

>Remicade (been debating that one off and on for about a year or

>more), and possible clinic visit. She about fell during the

>orchestra concert because her hip gave out on her but was able to

>catch herself on something.

>

>So that brings us to today. I called the local lab to see if they

>had a requisition this morning but they said no. I called the nurse

>to remind them and give them the fax number in case they don't have

>it. Called late in the afternoon and they still had not got the

>requisition. So then it was time to go to the church Christmas

>party. She fell down the stairs because her leg gave out. She is not

>sure if it was the hip or knee. So, it was back on the phone. This

>time I paged the rheumy. Thankfully he is good about calling right

>back when I page. He is worried that she may have torn her ACL or

>other ligament because she has worn down so much of her knee

>already. At this point I dont' think so but I guess time will tell.

>If she has severe pain, redness or swelling then it is off for a CT

>or MRI. So now he wants to give her a pred burst. She finally got

>down to 3.5 after a 2 year taper and now it is up to 20 daily. He

>faxed the lab himself while I was talking to him so we go for labs

>first. She is taking Ultam and Tylenol frequently. he tried to work

>her into clinic but with Christmas coming there are absolutely no

>openings. Oh and she is headed back to PT. Maybe we can strenghten

>her muscles to give her joints more stability.

>

>So at the moment we are watching a movie while she relaxes and ices

>her knee, which took the brunt of the fall. Unfortunately our house

>is a split level and her bedroom is downstairs so she has to go up

>and down stairs. I wish we could sell this house and buy a 1 story.

>Right now we just don't have the resources to do so.

>

>Thanks for listening. I needed a safe place to vent. I feel so

>overwhelmed after dealing with my grandma's hospitalization and

>death, helping my dad plan her funeral, sorting out her house,

>getting my dad's disabled brother who was cared for by his mom

>placed into a care facility and now her health problems. Then she

>fell. I can only hope and pray there is no serious damage on top of

>her other problems. Oh and then I missed my son's birthday so we are

>having his birthday tomorrow. Oh and of course Christmas is just

>around the corner. I feel so unprepared for it. Sorry to sound so

>dreary, like I said I'm just overwhelmed.

>

>May this new year bring us all what we are seeking--a relief from

>the pain, and sorrow of JRA. May a cure be found soon to provide all

>with a permanent remission.

>

>e, mom to joe (who turns 17 in 10 days; yes, she is counting

>the days)

>

>

>

>To leave this mailing list, send request to:

> -unsubscribe

>

>

[Guest guest]

Bless your heart e. I am so sorry to hear about the sudden loss of

your grandmother.

Rob has had his legs give out on him when he was in a severe flair. He

would fall down a lot. I am so sorry to hear about Joe, especially having

to go up on the pred. You have had a rough set of circumstances to deal

with, to say the least. May the new year bring Joe much relief, and bring

to you and your family a new beginning and hope for the future. There are

so many new drugs in research right now, that I feel much encouraged that

there will be even more hope for our kids in the next few years. Its just

getting thru these tough times until the miracles occur. And I do believe

in miracles....

and Rob 14 Spondy

On Sat, 20 Dec 2003 06:44:46 -0000 " boundforlondon "

<boundforlondon@...> writes:

> Okay, be prepared this is going to be a long one.LOL

>

> I spent last week out of state because my grandma had a massive

> heart attack. While I was there she passed away and we had her

> funeral. I forgot to ask someone to give my daughter her injections

>

> but was able to find a friend to come over and do it for her when

> she had both the MTX and Enbrel. But the big news is that she gave

> herself an injection of Enbrel. That was incedible for a girl so

> fearful of needles.

>

> When I flew in on Sunday she said she had been hurting. She was

> having a hard time walking at the airport. She has complained all

> week of joint pain, more than normal. Her knees are still stubborn

> and likely always will be. But this week it is complaints of ankle,

>

> hip, severe knee, wrist, and other complaints. No fever, no signs of

>

> infection but something definetly was up. Called the dr on Tuesday,

>

> nurse said he would call. No call back until I placed another call

> Thursday (sometimes they dont' seem to communicate too well)...He

> had a few ideas---labs to see what is happening, perhaps an

> underlying infection, possible pred burst, possible switch to

> Remicade (been debating that one off and on for about a year or

> more), and possible clinic visit. She about fell during the

> orchestra concert because her hip gave out on her but was able to

> catch herself on something.

>

> So that brings us to today. I called the local lab to see if they

> had a requisition this morning but they said no. I called the nurse

>

> to remind them and give them the fax number in case they don't have

>

> it. Called late in the afternoon and they still had not got the

> requisition. So then it was time to go to the church Christmas

> party. She fell down the stairs because her leg gave out. She is not

>

> sure if it was the hip or knee. So, it was back on the phone. This

> time I paged the rheumy. Thankfully he is good about calling right

> back when I page. He is worried that she may have torn her ACL or

> other ligament because she has worn down so much of her knee

> already. At this point I dont' think so but I guess time will tell.

>

> If she has severe pain, redness or swelling then it is off for a CT

>

> or MRI. So now he wants to give her a pred burst. She finally got

> down to 3.5 after a 2 year taper and now it is up to 20 daily. He

> faxed the lab himself while I was talking to him so we go for labs

> first. She is taking Ultam and Tylenol frequently. he tried to work

>

> her into clinic but with Christmas coming there are absolutely no

> openings. Oh and she is headed back to PT. Maybe we can strenghten

> her muscles to give her joints more stability.

>

> So at the moment we are watching a movie while she relaxes and ices

>

> her knee, which took the brunt of the fall. Unfortunately our house

>

> is a split level and her bedroom is downstairs so she has to go up

> and down stairs. I wish we could sell this house and buy a 1 story.

>

> Right now we just don't have the resources to do so.

>

> Thanks for listening. I needed a safe place to vent. I feel so

> overwhelmed after dealing with my grandma's hospitalization and

> death, helping my dad plan her funeral, sorting out her house,

> getting my dad's disabled brother who was cared for by his mom

> placed into a care facility and now her health problems. Then she

> fell. I can only hope and pray there is no serious damage on top of

>

> her other problems. Oh and then I missed my son's birthday so we are

>

> having his birthday tomorrow. Oh and of course Christmas is just

> around the corner. I feel so unprepared for it. Sorry to sound so

> dreary, like I said I'm just overwhelmed.

>

> May this new year bring us all what we are seeking--a relief from

> the pain, and sorrow of JRA. May a cure be found soon to provide all

>

> with a permanent remission.

>

> e, mom to joe (who turns 17 in 10 days; yes, she is counting

>

> the days)

>

>

>

> To leave this mailing list, send request to:

> -unsubscribe

>

>

[Guest guest]

Val,

Thanks for the thoughts and good wishes. We are hoping this is going

to work but so far no improvement. We are going to give a new

physical therapist a try to see if strenghtening those muscles might

help her from having her joints give out so much. She will be up and

then down without time to anticipate. I hate the steroids but if they

will work and help decrease the pain then it will be worth it. Oh,

that reminds me her rheumy was supposed to set up a bone density test

but he never did. I want to know where she is now so we can have

something to go by.

Christmas is definetly going to be different this year because of the

time we spent out of state with my grandma. I'm so glad I went though

and got to tell her goodbye and that she was still able to recognize

me and my dad. She thought since he and I flew in we were going to

take her home. It was kind of funny which is a good memory to take

away from it all. Glad that Rob is having a great December in

comparison to last year. Truthfully I'm not feeling the Christmas

spirit but have been listening to all the positive CDs we own and

watching Christmas movies to help. Thankfully I have a 7 year old who

is keeping my busy so that I can see Christmas through his eyes, of

believing in Santa and the miracle of the season. Helps me gain the

perspective I am desperately needing.

e, mom to joe almost 17

> e,

> I am so sorry to hear about your loss. My thoughts and prayers are

with you and your family. Special good wishes to Joe, it is so

discouraging to have to go back up on the steriods - tapering is such

a hard process. Hang in there - wishing all of you a cheering

Christmas and a pain free holiday season.

> Val

> Rob's Mom (6,systemic)

>

> In a message dated 12/20/2003 1:44:46 AM Eastern Standard

Time, " boundforlondon " <boundforlondon@y...> writes:

>

> >Okay, be prepared this is going to be a long one.LOL

> >

> >I spent last week out of state because my grandma had a massive

> >heart attack. While I was there she passed away and we had her

> >funeral. I forgot to ask someone to give my daughter her

injections

> >but was able to find a friend to come over and do it for her when

> >she had both the MTX and Enbrel. But the big news is that she gave

> >herself an injection of Enbrel. That was incedible for a girl so

> >fearful of needles.

> >

> >When I flew in on Sunday she said she had been hurting. She was

> >having a hard time walking at the airport. She has complained all

> >week of joint pain, more than normal. Her knees are still stubborn

> >and likely always will be. But this week it is complaints of

ankle,

> >hip, severe knee, wrist, and other complaints. No fever, no signs

of

> >infection but something definetly was up. Called the dr on

Tuesday,

> >nurse said he would call. No call back until I placed another call

> >Thursday (sometimes they dont' seem to communicate too well)...He

> >had a few ideas---labs to see what is happening, perhaps an

> >underlying infection, possible pred burst, possible switch to

> >Remicade (been debating that one off and on for about a year or

> >more), and possible clinic visit. She about fell during the

> >orchestra concert because her hip gave out on her but was able to

> >catch herself on something.

> >

> >So that brings us to today. I called the local lab to see if they

> >had a requisition this morning but they said no. I called the

nurse

> >to remind them and give them the fax number in case they don't

have

> >it. Called late in the afternoon and they still had not got the

> >requisition. So then it was time to go to the church Christmas

> >party. She fell down the stairs because her leg gave out. She is

not

> >sure if it was the hip or knee. So, it was back on the phone. This

> >time I paged the rheumy. Thankfully he is good about calling right

> >back when I page. He is worried that she may have torn her ACL or

> >other ligament because she has worn down so much of her knee

> >already. At this point I dont' think so but I guess time will

tell.

> >If she has severe pain, redness or swelling then it is off for a

CT

> >or MRI. So now he wants to give her a pred burst. She finally got

> >down to 3.5 after a 2 year taper and now it is up to 20 daily. He

> >faxed the lab himself while I was talking to him so we go for labs

> >first. She is taking Ultam and Tylenol frequently. he tried to

work

> >her into clinic but with Christmas coming there are absolutely no

> >openings. Oh and she is headed back to PT. Maybe we can strenghten

> >her muscles to give her joints more stability.

> >

> >So at the moment we are watching a movie while she relaxes and

ices

> >her knee, which took the brunt of the fall. Unfortunately our

house

> >is a split level and her bedroom is downstairs so she has to go up

> >and down stairs. I wish we could sell this house and buy a 1

story.

> >Right now we just don't have the resources to do so.

> >

> >Thanks for listening. I needed a safe place to vent. I feel so

> >overwhelmed after dealing with my grandma's hospitalization and

> >death, helping my dad plan her funeral, sorting out her house,

> >getting my dad's disabled brother who was cared for by his mom

> >placed into a care facility and now her health problems. Then she

> >fell. I can only hope and pray there is no serious damage on top

of

> >her other problems. Oh and then I missed my son's birthday so we

are

> >having his birthday tomorrow. Oh and of course Christmas is just

> >around the corner. I feel so unprepared for it. Sorry to sound so

> >dreary, like I said I'm just overwhelmed.

> >

> >May this new year bring us all what we are seeking--a relief from

> >the pain, and sorrow of JRA. May a cure be found soon to provide

all

> >with a permanent remission.

> >

> >e, mom to joe (who turns 17 in 10 days; yes, she is

counting

> >the days)

> >

> >

> >

> >To leave this mailing list, send request to:

> > -unsubscribe

> >

> >

[Guest guest]

,

Thank you for the thougts. It is past 2a.m. my time and I am wide

awake. Have so much to do that I should be doing something but

emotionally I need to be here right now. I keep hoping and praying

for the miracle of new treatment as well. We are currently debating

REmicade again. He mentioned it last year at this time but she

finally got somewhat under control so we decided to leave it alone.

He not being sure if it would make that much difference to her knees

and she not liking the idea of an IV. I don't know what to think at

this point. She is not doing any better as of yet. I don't know if I

should call the ped about a possible scan or not. Not that they

probably can do anything with these being the week of Christmas

anyway. X-rays won't show a thing and they do not have a MRI at our

local clinic. Don't think a CAT scan would show much, hasn't in the

past. And then would have to fight the insurance company. So many

decisions and our rheumy is away for the holiday. We are having a

simple quiet Christmas which is what she needs. Thanks again for the

thoughts.

e

> Bless your heart e. I am so sorry to hear about the sudden

loss of

> your grandmother.

> Rob has had his legs give out on him when he was in a severe flair.

He

> would fall down a lot. I am so sorry to hear about Joe, especially

having

> to go up on the pred. You have had a rough set of circumstances to

deal

> with, to say the least. May the new year bring Joe much relief, and

bring

> to you and your family a new beginning and hope for the future.

There are

> so many new drugs in research right now, that I feel much

encouraged that

> there will be even more hope for our kids in the next few years.

Its just

> getting thru these tough times until the miracles occur. And I do

believe

> in miracles....

> and Rob 14 Spondy

>

> On Sat, 20 Dec 2003 06:44:46 -0000 " boundforlondon "

> <boundforlondon@y...> writes:

> > Okay, be prepared this is going to be a long one.LOL

> >

> > I spent last week out of state because my grandma had a massive

> > heart attack. While I was there she passed away and we had her

> > funeral. I forgot to ask someone to give my daughter her

injections

> >

> > but was able to find a friend to come over and do it for her when

> > she had both the MTX and Enbrel. But the big news is that she

gave

> > herself an injection of Enbrel. That was incedible for a girl so

> > fearful of needles.

> >

> > When I flew in on Sunday she said she had been hurting. She was

> > having a hard time walking at the airport. She has complained all

> > week of joint pain, more than normal. Her knees are still

stubborn

> > and likely always will be. But this week it is complaints of

ankle,

> >

> > hip, severe knee, wrist, and other complaints. No fever, no signs

of

> >

> > infection but something definetly was up. Called the dr on

Tuesday,

> >

> > nurse said he would call. No call back until I placed another

call

> > Thursday (sometimes they dont' seem to communicate too well)...He

> > had a few ideas---labs to see what is happening, perhaps an

> > underlying infection, possible pred burst, possible switch to

> > Remicade (been debating that one off and on for about a year or

> > more), and possible clinic visit. She about fell during the

> > orchestra concert because her hip gave out on her but was able to

> > catch herself on something.

> >

> > So that brings us to today. I called the local lab to see if they

> > had a requisition this morning but they said no. I called the

nurse

> >

> > to remind them and give them the fax number in case they don't

have

> >

> > it. Called late in the afternoon and they still had not got the

> > requisition. So then it was time to go to the church Christmas

> > party. She fell down the stairs because her leg gave out. She is

not

> >

> > sure if it was the hip or knee. So, it was back on the phone.

This

> > time I paged the rheumy. Thankfully he is good about calling

right

> > back when I page. He is worried that she may have torn her ACL or

> > other ligament because she has worn down so much of her knee

> > already. At this point I dont' think so but I guess time will

tell.

> >

> > If she has severe pain, redness or swelling then it is off for a

CT

> >

> > or MRI. So now he wants to give her a pred burst. She finally got

> > down to 3.5 after a 2 year taper and now it is up to 20 daily. He

> > faxed the lab himself while I was talking to him so we go for

labs

> > first. She is taking Ultam and Tylenol frequently. he tried to

work

> >

> > her into clinic but with Christmas coming there are absolutely no

> > openings. Oh and she is headed back to PT. Maybe we can

strenghten

> > her muscles to give her joints more stability.

> >

> > So at the moment we are watching a movie while she relaxes and

ices

> >

> > her knee, which took the brunt of the fall. Unfortunately our

house

> >

> > is a split level and her bedroom is downstairs so she has to go

up

> > and down stairs. I wish we could sell this house and buy a 1

story.

> >

> > Right now we just don't have the resources to do so.

> >

> > Thanks for listening. I needed a safe place to vent. I feel so

> > overwhelmed after dealing with my grandma's hospitalization and

> > death, helping my dad plan her funeral, sorting out her house,

> > getting my dad's disabled brother who was cared for by his mom

> > placed into a care facility and now her health problems. Then she

> > fell. I can only hope and pray there is no serious damage on top

of

> >

> > her other problems. Oh and then I missed my son's birthday so we

are

> >

> > having his birthday tomorrow. Oh and of course Christmas is just

> > around the corner. I feel so unprepared for it. Sorry to sound so

> > dreary, like I said I'm just overwhelmed.

> >

> > May this new year bring us all what we are seeking--a relief from

> > the pain, and sorrow of JRA. May a cure be found soon to provide

all

> >

> > with a permanent remission.

> >

> > e, mom to joe (who turns 17 in 10 days; yes, she is

counting

> >

> > the days)

> >

> >

> >

> > To leave this mailing list, send request to:

> > -unsubscribe

> >

> >