Re: Tracie

[Guest guest]

Hi Tracie

When we told the doctor in the beginning he related it to his low

playlets....They started out of the blue last year just about this time....He

had been in the hosp for about 2 weeks and when he came home out HS football

team was in the play offs...something that had never happen since we have

lived here....He really wanted to go...He plays in the marching band so we

are usually at every game....Of course he had missed some because he had been

in the hosp.....anyway...it was a beautiful late fall day...sweatshirt

weather...so we told me ok...so off we all went...about 10 minutes from home

he yells from the back seat to stop....pull over...we have no idea what is

going on...we were on the highway so couldn't just stop....I looked

back...thinking he was going to get sick....well was I shocked...he was

covered in blood...just pouring out...not the trickle of a regular nose

bleed....Well we finally got over and luckily we always have a roll of paper

towels in car...what a mess and he was pretty shakened up by it....he had

never had one before of any kind....We sat for a really long time and got it

to stop and then sat there trying to decided what to do....finally we decided

to continue on....but said if it started again that was it and we would go

home....We enjoyed the game and he was fine...

Since then it has happened maybe a dozen more times...ahhh maybe more...since

he had 3 this week.....One time he ran to the bathroom and called for

me....because the amount of blood his breath made it splatter all over the

walls etc...what a sight...

When I first mentioned this on here others had said they too had nose

bleeds....something about the liver...that bleeds can happen anywhere...So my

feeling is to make sure your doctors make note of this...

Maybe others will tell you more about the actual medical reasons...

Luanne Ty's mom

[Guest guest]

Tracie, Jodi has the nose bleeds because her platelets are so low.

Genny/Jodi's Mom/AIH

[Guest guest]

,

Thanks again for taking the time to look this up for me. I will ask

my GP when I have my appointment in two weeks. In them meanime, I

am not going to worry about it. I have enough other stuff going on

to keep me busy until then. As always thanks again for sharing your

knowledge. I don't know what the group would do without you.

Hugs,

Tracie

> Tracie, I would ask your GP about it. I've searched on osteitis of

the skull

> and I'm not sure I can even guess what it could mean in your case,

if

> anything. I wouldn't worry about it, but I would mention it to

your

> physician so he could reassure you.

>

>

>

> Not an MD

>

> I'll tell you where to go!

>

> Mayo Clinic in Rochester

> http://www.mayoclinic.org/rochester

>

> s Hopkins Medicine

> http://www.hopkinsmedicine.org

>

>

> [ ] HELLO GINA!

>

>

> > Hi ,

> >

> > Sorry it took me so long to read your posts back to me. I had

to go

> > away to one of my doctor's appts which is far away so we went

> > overnight. The good news is my hitchhiker toe seems to be

> > responding to the walking cast treatment so no surgery yet, three

> > more weeks in the cast though.

> >

> > About the osteitis thingy. My rheumy said not a word. I was

going

> > to ask my GP on my visit to her in a couple of weeks. Should I

be

> > concerned?

> >

> > I was shocked to see the statistics on Baker's cysts in patients

> > with RA. I wish I had known this back a year ago when that cyst

was

> > giving me so much trouble and I knew there was something much

bigger

> > wrong with me and nobody could figure it out. My diagnosis might

> > have happened a lot quicker and I would possibly be in a better

> > situation than I am right now with the amount of damage that has

> > been done to my body from the delay. I did not find you guys in

> > time!! Well, at least I am on the right road now and trying to

stay

> > positive. You guys are all the best and I could not do it

without

> > all of you. I have made some truly wonderful friends through

this

> > group.

> >

> > I am about to participate in that Remicade study tonight. They

are

> > supposed to call. Anyone else do it? How did it go? Maybe we

are

> > not supposed to talk about it and if so sorry. Mums the word.

> >

> > Again, thanks for everything . You are a Godsend.

> >

> > Hugs,

> >

> > Tracie in Maine

[Guest guest]

,

Thanks again for taking the time to look this up for me. I will ask

my GP when I have my appointment in two weeks. In them meanime, I

am not going to worry about it. I have enough other stuff going on

to keep me busy until then. As always thanks again for sharing your

knowledge. I don't know what the group would do without you.

Hugs,

Tracie

> Tracie, I would ask your GP about it. I've searched on osteitis of

the skull

> and I'm not sure I can even guess what it could mean in your case,

if

> anything. I wouldn't worry about it, but I would mention it to

your

> physician so he could reassure you.

>

>

>

> Not an MD

>

> I'll tell you where to go!

>

> Mayo Clinic in Rochester

> http://www.mayoclinic.org/rochester

>

> s Hopkins Medicine

> http://www.hopkinsmedicine.org

>

>

> [ ] HELLO GINA!

>

>

> > Hi ,

> >

> > Sorry it took me so long to read your posts back to me. I had

to go

> > away to one of my doctor's appts which is far away so we went

> > overnight. The good news is my hitchhiker toe seems to be

> > responding to the walking cast treatment so no surgery yet, three

> > more weeks in the cast though.

> >

> > About the osteitis thingy. My rheumy said not a word. I was

going

> > to ask my GP on my visit to her in a couple of weeks. Should I

be

> > concerned?

> >

> > I was shocked to see the statistics on Baker's cysts in patients

> > with RA. I wish I had known this back a year ago when that cyst

was

> > giving me so much trouble and I knew there was something much

bigger

> > wrong with me and nobody could figure it out. My diagnosis might

> > have happened a lot quicker and I would possibly be in a better

> > situation than I am right now with the amount of damage that has

> > been done to my body from the delay. I did not find you guys in

> > time!! Well, at least I am on the right road now and trying to

stay

> > positive. You guys are all the best and I could not do it

without

> > all of you. I have made some truly wonderful friends through

this

> > group.

> >

> > I am about to participate in that Remicade study tonight. They

are

> > supposed to call. Anyone else do it? How did it go? Maybe we

are

> > not supposed to talk about it and if so sorry. Mums the word.

> >

> > Again, thanks for everything . You are a Godsend.

> >

> > Hugs,

> >

> > Tracie in Maine

[Guest guest]

Hi Tracie:

I am sorry that you continue to be in so much pain.

Your doctor sounds like a real jerk - with her just

getting out of school you would hope that she would be

more sensitive to her patients, and that they would be

teaching more regarding RA too. Guess that is not the

case. You need pain medication - I think some doctors

are still of the mind set of " it's only arthritis "

even when it is RA which is so much more than just

arthritis.

Taking your husband may help - sometimes hearing from

someone else affected by the RA, other than the

patient, can be more informative. Like it was

recommended in another post, have him take in a list

of what you no longer can do, how your pain affects

now only you, but your family, your children. Your

children need you, and you are unable to take care of

them because you need care yourself. Have him

describe how you spend your days, how you can't sleep,

everything, and don't back down. I sure hope that it

helps.

I hate HMOs for those very reasons - if your primary

does not feel you need something, then you don't get

it, not referrals, not medication, not treatment. I

was in a HMO once and heard rumors that the doctors

were given bonuses to keep patient costs down, to keep

exams to a minimum time, and write less prescriptions,

etc. Has she even referred you to a rheumy? Pain

medications for RA are an important part of the

treatment process - when you need that help, you

should be able to get it. Addiction should not even

be part of the equation - we need pain relief, we do

not get a drug high out of it.

You are not whining, Tracie, you are in pain. There

are days when I can do nothing but sit, mind numbed by

the pain and fatigue, or cry from the frustration of

it all. Sick and tired of being sick and tired. I

hear you. I hope that your visit coming up will

finally have the doctor's eyes opened when she hears

from your husband as well. Please let us know what

happens - take care -

Kathe in CA

--- tracierae143 <tracierae@...> wrote:

> Hi everyone,

>

> Sorry I have been so bad about writing, not been

> feeling that well,

> no pain meds:o( Trying to get by withuot, but

> sneaking ibuprofen

> here and there. My husband has decided to come with

> me to my rheumy

> appt on the 30th. I am just to sick and tired to

> speak up for

> myself, does that make sense to anyone? I just have

> lost all my

> fight. I truly don't care anymore about it. If

> they don't want to

> treat my pain, fine, I will just sit here and

> suffer, not check the

> board, not do anything. My kids are home for summer

> vacation (all

> three, ages 5, 11, and 14) so that is hard enough.

> Is there any

> specific questions he should ask or she would just

> fire him or

> what? It is actually my primary care doctor that we

> don't like at

> all, she has no bedside manner and is just out of

> school and

> probably is only here in Maine to pay off her

> student loans and then

> will leave anyway. I just seem to be drifting and

> not knowing what

> to do, kinda stuck in limbo with the whole process.

> I am taking my

> Humira and that does seem to help the fatigue some,

> but I still have

> pain but I have only had three shots. I am still on

> 15 mg a day of

> Prednisone and absolutely cannot get by without it.

> I have been on

> it for seven months now and they just did a bone

> density study to

> see how that is. I would not be able to function at

> all without

> it. My sed rate goes back up through the roof when

> they try to wean

> me, etc. Still on the MTX, but the pills not the

> shots and folic

> acid as well as my Nexium for my esophageal spasms

> and reflux.

>

> I am sorry if I am whining, really I am. I just

> have not had the

> energy to even read the posts. I hope I have not

> missed any that I

> should have answered. If I have, please do not take

> it personally I

> just was not up to it. I think on this board when

> people get quiet

> and you don't hear from them for long periods it is

> because they are

> not doing to well huh?

>

> Well, email me if you really want me to get it or

> post and I will

> try to read it ASAP, but before the appt on the

> 30th. Possibly a

> list of questions would be in order? I don't

> understand why I

> cannot go to a pain management clinic, but with my

> HMO I cannot do

> anything unless my primary care doctor okays it and

> she says no. By

> the way, I did not have any withdrawal symptoms or

> anything coming

> off the pain med. I only had two scripts and I did

> not over take

> them or anything, geez. It seems like they are

> paranoid or

> something. Of course, my sleep is suffering so I am

> going to have

> to try some of that tea!

>

> Thanks for listening!

>

> Tracie in Maine

>

>

>

>

Kathe in CA

__________________________________________________

[Guest guest]

Hi Tracie:

I am sorry that you continue to be in so much pain.

Your doctor sounds like a real jerk - with her just

getting out of school you would hope that she would be

more sensitive to her patients, and that they would be

teaching more regarding RA too. Guess that is not the

case. You need pain medication - I think some doctors

are still of the mind set of " it's only arthritis "

even when it is RA which is so much more than just

arthritis.

Taking your husband may help - sometimes hearing from

someone else affected by the RA, other than the

patient, can be more informative. Like it was

recommended in another post, have him take in a list

of what you no longer can do, how your pain affects

now only you, but your family, your children. Your

children need you, and you are unable to take care of

them because you need care yourself. Have him

describe how you spend your days, how you can't sleep,

everything, and don't back down. I sure hope that it

helps.

I hate HMOs for those very reasons - if your primary

does not feel you need something, then you don't get

it, not referrals, not medication, not treatment. I

was in a HMO once and heard rumors that the doctors

were given bonuses to keep patient costs down, to keep

exams to a minimum time, and write less prescriptions,

etc. Has she even referred you to a rheumy? Pain

medications for RA are an important part of the

treatment process - when you need that help, you

should be able to get it. Addiction should not even

be part of the equation - we need pain relief, we do

not get a drug high out of it.

You are not whining, Tracie, you are in pain. There

are days when I can do nothing but sit, mind numbed by

the pain and fatigue, or cry from the frustration of

it all. Sick and tired of being sick and tired. I

hear you. I hope that your visit coming up will

finally have the doctor's eyes opened when she hears

from your husband as well. Please let us know what

happens - take care -

Kathe in CA

--- tracierae143 <tracierae@...> wrote:

> Hi everyone,

>

> Sorry I have been so bad about writing, not been

> feeling that well,

> no pain meds:o( Trying to get by withuot, but

> sneaking ibuprofen

> here and there. My husband has decided to come with

> me to my rheumy

> appt on the 30th. I am just to sick and tired to

> speak up for

> myself, does that make sense to anyone? I just have

> lost all my

> fight. I truly don't care anymore about it. If

> they don't want to

> treat my pain, fine, I will just sit here and

> suffer, not check the

> board, not do anything. My kids are home for summer

> vacation (all

> three, ages 5, 11, and 14) so that is hard enough.

> Is there any

> specific questions he should ask or she would just

> fire him or

> what? It is actually my primary care doctor that we

> don't like at

> all, she has no bedside manner and is just out of

> school and

> probably is only here in Maine to pay off her

> student loans and then

> will leave anyway. I just seem to be drifting and

> not knowing what

> to do, kinda stuck in limbo with the whole process.

> I am taking my

> Humira and that does seem to help the fatigue some,

> but I still have

> pain but I have only had three shots. I am still on

> 15 mg a day of

> Prednisone and absolutely cannot get by without it.

> I have been on

> it for seven months now and they just did a bone

> density study to

> see how that is. I would not be able to function at

> all without

> it. My sed rate goes back up through the roof when

> they try to wean

> me, etc. Still on the MTX, but the pills not the

> shots and folic

> acid as well as my Nexium for my esophageal spasms

> and reflux.

>

> I am sorry if I am whining, really I am. I just

> have not had the

> energy to even read the posts. I hope I have not

> missed any that I

> should have answered. If I have, please do not take

> it personally I

> just was not up to it. I think on this board when

> people get quiet

> and you don't hear from them for long periods it is

> because they are

> not doing to well huh?

>

> Well, email me if you really want me to get it or

> post and I will

> try to read it ASAP, but before the appt on the

> 30th. Possibly a

> list of questions would be in order? I don't

> understand why I

> cannot go to a pain management clinic, but with my

> HMO I cannot do

> anything unless my primary care doctor okays it and

> she says no. By

> the way, I did not have any withdrawal symptoms or

> anything coming

> off the pain med. I only had two scripts and I did

> not over take

> them or anything, geez. It seems like they are

> paranoid or

> something. Of course, my sleep is suffering so I am

> going to have

> to try some of that tea!

>

> Thanks for listening!

>

> Tracie in Maine

>

>

>

>

Kathe in CA

__________________________________________________