Re: long post, reached my end * graphic

[Guest guest]

Hello Kerri sue

Hi, I haven't participated for a while because I'm back at work since summer

break but your post really upset me. I'm sorry things have been going so badly

for you and I don't really know if I have any advice other than to hang in

there.

I know this may sound trivial but your kids need you no matter what

condition you are in. They need your advice, wisdom, and love. Don't worry to

much

about the letting loose with how you feel at the doctors. They probably

needed to hear it. Sometimes people in the medical field become hard/cold and

need

a wake-up call as to how they are treating people (I convinced that most of

the time they aren't even aware). Anyway I hope you can take a deep breath and

look at how much people need you. Don't give up as things will get better.

Take Care

Babs

[Guest guest]

Wow Kerri!!!

I am not here often but your post made me stand up and pay attention,

that's for sure. Wow! I am speechless. My heart goes out to you.

I can't even explain how I feel after reading your post. I just know

noone should go through this much pain and torture. I will pray

really hard and a special prayer for you. I want to do something for

you, but I am in a crazy situation myself. But I will always keep

you in my mind and heart, always wishing good things for you. You

must be going for the gold medal in heaven because it is unreal how

you have described things. And you still have your sense of humor,

it shows in your very serious message. You are doing great under

those circumstances. Your attitude is great. I almost want to

suggest counseling only because this is so overwhelming for you to be

gong through alone and it sounds like you are alone, for the most

part, but of course you have this web site. If you live near me, I

can babysit or grocery shop for your or do something. I don't know

what but try to ease the pain a little. I live in Atlanta if you

don't live near me and don't want to reveal your location just say no

you don't live near me because you can never be too careful dealing

with people over the internet.

Also, you can also keep a journal instead of seeing a counselor and

sometimes you can figure things out on your own. Or you can do

both. They can't make the pain go away and noone can and that is all

that will get rid of the depression other than more drugs. Don't get

me wrong some of the meds work for some people so they are a godsend

for some. I am not knocking them but you sound like you are very

sensitive to meds, so journaling is a healthy, nontoxic way to vent

and also, to start your bestseller because you need to write a book

about your life and with your sense of humor, you are the best person

to talk about RA and maybe educate some of those healthy folks out

there about what we go through everyday. They really have no clue.

I am still recovering as well from hospitalization and blood clot in

the lung, swoolen lymph nodes, and cat scratch fever, kidneys

failing, and on and on, etc. so I feel I understand what you are

going through but you have been through so much more and at such a

young age. I'm 41 now but this nightmare started at 31-- in my

prime. My heart goes out to you. You will definitely be in my

prayers.

Take care. Many blessings to you.

love and peace to all,

Ebony

[Guest guest]

kerri sue, i am so sorry to hear of your troubles. hang in there. i had a

rough time at the very beginning of mtx injections. but once i got thru the

first 6 weeks, i have to tell you i got most of my life back. my son is grown,

but i was able to go back and work almost 20 hrs a week. i have also started my

social life over. i have been going to concerts again for the first times in

6 yrs. before i got there i wrote my dr a 4 page letter pretty much telling

her i was watching life go by out the windows and felt trapped and no one

could help me. it made her cry and when she told me that it made me cry. i am

fortunate to have such a wonderful rheumi behind me, but anyway. our

circumstances might be different. but i also felt like you. i am going thru a

rough

time after a depo medrol shot. it has put my social life at a standstill and

especially since it's my birthday next week and the holidays coming. i am not

happy about it. but my life is still so much better thanks to the right combo

of meds (until i went to try and boost it a little)

kathy in il

[Guest guest]

Kerri,

This is heartbreaking. To be only 28 and have all of this to deal

with is just not fair. I wish I had answers for you. I wish you

could get better medical care. For it to take 3 years to get your

doctor to run tests is just awful. So he finally runs them and

it shows you've really got something wrong, yet he still drags his

feet and doesn't try to help you. Shame on him.

Even though the other doctors are in the same clinic, maybe they will

listen to you??? It may be worth a try to at least

find out. I just LOVE how the PA insinuates that you're doing

something to make yourself sick. If you switched doctors, would

you still have to see that PA? She doesn't sound qualified to treat

my dog. Side effects are not nonsense!!!

There was a time in my life when I felt the way you do. My kids were

young, I was in terrible pain and I couldn't see things

getting any better. I often though my family would be better off

without me. I felt I was a burden and had nothing to offer.

I know a big part of my problems were that besides being depressed, I

slept terribly. I started taking antidepressants and they helped.

I

What helped the most was the antidepressant trazadone an hour before

bed. I used to have a bad sleep disorder until I started taking

trazadone. I was on it for a few years but then was able to stop

taking it. I now sleep pretty good without having to take trazadone.

I have my bad nights, but

even healthy people do.

When Enbrel was approved my life once again got so much better. It

was the first med that really helped. It couldn't do anything for the

damage done, but at least I had hope for the first time that maybe

things would get better instead of worse. Just maybe I wouldn't be a

permanent fixture in a wheelchair. I look back on the dark days and

am so thankful that I had the strength to get through them. I hope

one day you look back on these dark days and wonder how you survived

them. I hope you can find a way to get better medical care.

a

On Nov 18, 2005, at 9:58 AM, kerri paquette wrote:

> First let me explain a few things.... the way my rheumy sees

> patients is every other month and in between those appts, you see

> his prescribing PA who follows your meds and makes sure your blood

> work is done. Yesterday I had an appt with the PA.

>

> As many of you know I'm a little over three months post op now,

> recovering from breast reduction surgery. Recovery has been long

> and as of now, I still have open wounds, my plastic surgeon who

> performed this surgery also has RA.

>

> About five years ago I noticed that every night when I got into

> bed I was hurting more than usual, I was having a hard time doing

> anything other than work and taking care of my daughter, I had no

> energy for anything. My marriage was falling apart, my husband was

> a drinker and he never dealt well with health problems which I have

> had plenty of. I have a history of OB/GYN problems, kidney stones,

> migraines, anxiety and had dealt with a case of " cat scratch fever "

> as a kid prompting the removal of several lymphnodes from the right

> side of my body thereby making me very prone to catching anything

> from a cold to pneumonia. During the winter of 2000-2001 I was

> coming home from work at 4 in the morning in below zero temperature

> and my front door was frozen shut, so I leaned into it a few times

> and slammed through the door to get it open. Long story short, I

> injured my shoulder and dislocated my first rib.

>

> In July of 2002, I went into the ER with excruciating pelvic

> pain, they could find no cause, so they gave me percocet and sent

> me home. I returned 6 hours later unable to walk the pain was so

> bad, they admitted me my white count was elevated. They gave me a

> diagnosis if Pelvic Inflammatory Disease and admitted me into the

> hospital with IV antibiotics for 3 days, turns out they were wrong,

> I was passing a kidney stone and the antibiotics they were giving

> me were not supposed to be given to someone with kidney problems or

> stones, needless to say, I got sick. When I finally returned home,

> I slept on the couch almost non-stop. Two days later, I awoke to

> hear my husbands' alarm clock going off in the bedroom, as it was

> 9, I knew he was late for work, so I went in to wake him up. He was

> still drunk and went crazy, he tried to strangle me and he beat me

> while my daughter watched. My neighbors called the cops and He was

> arrested and removed from the home. When I was growing up a was me,

> my sister and my mother. The best way for me to explain my

> childhood is this. When I was 7, my mother made my sister and I

> eggs for breakfast. Well you know when the white part gets runny

> when it isn't cooked all the way? I didn't like that, it reminded

> me of snot, so I ate all around it and all inside it, but not that

> part, my mother told me, I wasn't getting up from the table until

> it was done, by this time it was cold, so she stood behind me and

> hit the back of my head every minute or so to make me take a bite,

> finally I gagged on it and threw up all over my plate and when this

> happened my mother made me eat that too. That was my life. When my

> husband did this, he only need do it once, no second chance, he was

> out. The charges were reduced from attempted murder to disorderly

> conduct, he had 6 months probation and a $200 fine. At that point

> my life spiraled and I never returned to work, my daughter and I

> had to move out of our home and into a housing project, I started

> collecting food stamps and welfare and went about trying to figure

> out why I never felt good.

>

> In Jan of 2003 I had two cavities in my mouth, I had them filled

> and went on my way. About a week later, one of the teeth became

> severly infected, the infection traveled into my jaw and

> surrounding teeth, slowly and much like a domino type thing, my

> teeth started falling out... in January of 2004 I had surgery to

> remove the rest of my remaining teeth.

>

> Of course, no one ever listened to me and still no one ever does.

> I took 3 years for my doctor to finally run tests on me and send me

> to a rheumatologist and now I still have to beg just to have my

> anti-depressant increased. I can't change doctors, the only other

> ones available are in the same clinic, I don't drive and we don't

> have a car. My migraines keep getting worse and worse and more

> frequent and more frequent, but still no one listens to me, they

> won't try a new med, they won't do a scan, nothing. I have

> persistant tachycardia, recurring chest and neck pain and high

> triglycerides and they will not do any tests on my heart because

> " you're young, there shouldn't be anything wrong with your heart "

> I'm on medication for diabetes and nobody has ever told me I have

> diabetes. My doctors don't listen and my hands are bound, I have

> screamed and cried and I don't know what to do.... so this all

> leads to yesterdays' appt.

>

> I went in to see the PA and had my lab work drawn, it took 4

> picks to get it, which already started me off on a bad note. The

> one thing I wanted to talk to the PA about was taking Humira, I was

> concerned with that, since I always seem to be fighting off

> infections as it is and the side effects that are listed for it,

> scare that crap out of me. I also told her my plastic surgeons

> concerns and my primary's concerns.... her response " you pay us to

> make these decisions " " just because your plastic surgeon has RA

> doesn't mean he knows about it " " side effects that are listed on

> meds are nonsense, they only put them there because they have to,

> don't pay attention to them " " you should stop reading so much,

> because obviously you don't know what you are talking

> about " (concerning humira/lymphoma)

> When I told her I felt like my primary doctor was listening to me

> becaue I wasn't receiving proper pain management and not sleeping

> because he won't up my sleeping meds she said " thats nonsense "

> " he's a good doctor " " its not his job to treat your RA "

> regarding the sickness I got from the MTX pills " I think you just

> had a stomach bug " " if you keep complaining about side effects

> we're not going to be able to treat you " " we're running out of

> options, you have two left, or you can just go home and die "

>

> Well, excuse my language, but I finally lost my shit. I started

> screaming and it came out something like this.

> nobody ever listens to me, Dr. Mccahill never listens to me, and

> right now you aren't even listening to me. I had to threaten

> suicide before he would even do bloodwork on me and lo and behold

> WOW, something was wrong, lots of somethings actually. I'm in pain,

> I'm sick all the time and these medications I'm taking sometimes

> help and sometimes don't, so excuse me if I analyze all of them,

> but its my body you are putting them into and its my body that is

> sick and its my body that will pay the price. I never feel good, I

> never sleep, my doctor says that most of my pain is RA related, you

> say its not, so you can pass me off on each other and no one does a

> damn thing to help me and in the meantime I have a baby boy growing

> up at home that I can even pick up.

>

> to which she replied... " well what are YOU doing that makes you

> sick all the time "

>

> and I said....WHY DON'T YOU TELL ME, YOU'RE THE ONE WITH THE

> DEGREE, " YOU'RE THE ONE I'M PAYING " you're the one who's so smart

> and thinks I don't know what I'm talking about so please tell me

> why I'm sick all the time because lady, I'd rather be dead and with

> god then alive with someone like you.

>

> well, after my outburst, her attitude turned around a bit, but

> not enough to suit me, I'm so lost and I don't know what to do. I'm

> supposed to go back there today to learn how to self inject my MTX.

>

> I'm 28, I have no teeth, I'm fat because I can't get around well,

> I have two kids that deserve better and a fiance that works his

> butt off 6 days a week bringing home $300 a week to support a

> family of four. I have nothing to offer him anymore, I at least

> used to have my sense of humor and that has absolutely died on me.

> I just can't take this. My life consists of doctors appts and 15

> medications and this year alone I've had 4 surgeries. Christmas is

> coming and I have nothing to offer anybody. I know that God is only

> supposed to give us what we can handle, but I can't handle this

> anymore and I need him to stop it, I just need it all to stop.god

> bless all of you.

>

> kerri sue

>

>

> ---------------------------------

> FareChase - Search multiple travel sites in one click.

>

>

[Guest guest]

kathy,

thank you for your kind words. I gave myself my first mtx injection friday

afternoon. It went much better than the pills. I did not throw up even once.

Nausea, fatigue, achy, and a migraine that seemed to be what hit me... I slept a

ton over the weekend and it seems the worst of it is over. I'm not sure when I

should start feeling *better* from this or not. Will I lose my hair? and if so,

like just a little or a lot? thank you again for your email.

kerri sue

kringlemom@... wrote:

kerri sue, i am so sorry to hear of your troubles. hang in there. i had a

rough time at the very beginning of mtx injections. but once i got thru the

first 6 weeks, i have to tell you i got most of my life back. my son is grown,

but i was able to go back and work almost 20 hrs a week. i have also started my

social life over. i have been going to concerts again for the first times in

6 yrs. before i got there i wrote my dr a 4 page letter pretty much telling

her i was watching life go by out the windows and felt trapped and no one

could help me. it made her cry and when she told me that it made me cry. i am

fortunate to have such a wonderful rheumi behind me, but anyway. our

circumstances might be different. but i also felt like you. i am going thru a

rough

time after a depo medrol shot. it has put my social life at a standstill and

especially since it's my birthday next week and the holidays coming. i am not

happy about it. but my life is still so much better thanks to the right combo

of meds (until i went to try and boost it a little)

kathy in il

[Guest guest]

a,

thank you for your kind words. I take the antidepressant Celexa and

nortriptyline and topamax to sleep, but they aren't helping, and I've told my GP

and my Rheumy that, but apparently thats not important because they haven't

offered anything else. I have another appt with my GP on the 2nd and I will try

again. My fiance and I are considering a move which does rely on him being able

to transfer within his company...if he can do that we may be able to get to a

bigger place where there are more doctors and better health care. The people

around here look at me like I am nothing. You know, no teeth, 200 lbs, limp, on

welfare... but they don't see me for who I am, that I have an IQ of 148 and

learned to read out of my mother's abnormal psychology books and that I know

what they are thinking behind judgemental eyes. I look back years ago when I had

graduated from high school at 16 and was accepted to Northeastern Univeristy and

now the only thing I have left is what is in my brain and

most of the drugs I take are frying that away every day. I'm dissappointed in

myself for where I am now and disappointed in the people around me who I should

be able to depend on. I'm sure I'll be alright, but I guess sometimes you just

have to get downright mad. thank you for letting me vent.

kerri sue

a <a54@...> wrote:

Kerri,

This is heartbreaking. To be only 28 and have all of this to deal

with is just not fair. I wish I had answers for you. I wish you

could get better medical care. For it to take 3 years to get your

doctor to run tests is just awful. So he finally runs them and

it shows you've really got something wrong, yet he still drags his

feet and doesn't try to help you. Shame on him.

Even though the other doctors are in the same clinic, maybe they will

listen to you??? It may be worth a try to at least

find out. I just LOVE how the PA insinuates that you're doing

something to make yourself sick. If you switched doctors, would

you still have to see that PA? She doesn't sound qualified to treat

my dog. Side effects are not nonsense!!!

There was a time in my life when I felt the way you do. My kids were

young, I was in terrible pain and I couldn't see things

getting any better. I often though my family would be better off

without me. I felt I was a burden and had nothing to offer.

I know a big part of my problems were that besides being depressed, I

slept terribly. I started taking antidepressants and they helped.

I

What helped the most was the antidepressant trazadone an hour before

bed. I used to have a bad sleep disorder until I started taking

trazadone. I was on it for a few years but then was able to stop

taking it. I now sleep pretty good without having to take trazadone.

I have my bad nights, but

even healthy people do.

When Enbrel was approved my life once again got so much better. It

was the first med that really helped. It couldn't do anything for the

damage done, but at least I had hope for the first time that maybe

things would get better instead of worse. Just maybe I wouldn't be a

permanent fixture in a wheelchair. I look back on the dark days and

am so thankful that I had the strength to get through them. I hope

one day you look back on these dark days and wonder how you survived

them. I hope you can find a way to get better medical care.

a

On Nov 18, 2005, at 9:58 AM, kerri paquette wrote:

> First let me explain a few things.... the way my rheumy sees

> patients is every other month and in between those appts, you see

> his prescribing PA who follows your meds and makes sure your blood

> work is done. Yesterday I had an appt with the PA.

>

> As many of you know I'm a little over three months post op now,

> recovering from breast reduction surgery. Recovery has been long

> and as of now, I still have open wounds, my plastic surgeon who

> performed this surgery also has RA.

>

> About five years ago I noticed that every night when I got into

> bed I was hurting more than usual, I was having a hard time doing

> anything other than work and taking care of my daughter, I had no

> energy for anything. My marriage was falling apart, my husband was

> a drinker and he never dealt well with health problems which I have

> had plenty of. I have a history of OB/GYN problems, kidney stones,

> migraines, anxiety and had dealt with a case of " cat scratch fever "

> as a kid prompting the removal of several lymphnodes from the right

> side of my body thereby making me very prone to catching anything

> from a cold to pneumonia. During the winter of 2000-2001 I was

> coming home from work at 4 in the morning in below zero temperature

> and my front door was frozen shut, so I leaned into it a few times

> and slammed through the door to get it open. Long story short, I

> injured my shoulder and dislocated my first rib.

>

> In July of 2002, I went into the ER with excruciating pelvic

> pain, they could find no cause, so they gave me percocet and sent

> me home. I returned 6 hours later unable to walk the pain was so

> bad, they admitted me my white count was elevated. They gave me a

> diagnosis if Pelvic Inflammatory Disease and admitted me into the

> hospital with IV antibiotics for 3 days, turns out they were wrong,

> I was passing a kidney stone and the antibiotics they were giving

> me were not supposed to be given to someone with kidney problems or

> stones, needless to say, I got sick. When I finally returned home,

> I slept on the couch almost non-stop. Two days later, I awoke to

> hear my husbands' alarm clock going off in the bedroom, as it was

> 9, I knew he was late for work, so I went in to wake him up. He was

> still drunk and went crazy, he tried to strangle me and he beat me

> while my daughter watched. My neighbors called the cops and He was

> arrested and removed from the home. When I was growing up a was me,

> my sister and my mother. The best way for me to explain my

> childhood is this. When I was 7, my mother made my sister and I

> eggs for breakfast. Well you know when the white part gets runny

> when it isn't cooked all the way? I didn't like that, it reminded

> me of snot, so I ate all around it and all inside it, but not that

> part, my mother told me, I wasn't getting up from the table until

> it was done, by this time it was cold, so she stood behind me and

> hit the back of my head every minute or so to make me take a bite,

> finally I gagged on it and threw up all over my plate and when this

> happened my mother made me eat that too. That was my life. When my

> husband did this, he only need do it once, no second chance, he was

> out. The charges were reduced from attempted murder to disorderly

> conduct, he had 6 months probation and a $200 fine. At that point

> my life spiraled and I never returned to work, my daughter and I

> had to move out of our home and into a housing project, I started

> collecting food stamps and welfare and went about trying to figure

> out why I never felt good.

>

> In Jan of 2003 I had two cavities in my mouth, I had them filled

> and went on my way. About a week later, one of the teeth became

> severly infected, the infection traveled into my jaw and

> surrounding teeth, slowly and much like a domino type thing, my

> teeth started falling out... in January of 2004 I had surgery to

> remove the rest of my remaining teeth.

>

> Of course, no one ever listened to me and still no one ever does.

> I took 3 years for my doctor to finally run tests on me and send me

> to a rheumatologist and now I still have to beg just to have my

> anti-depressant increased. I can't change doctors, the only other

> ones available are in the same clinic, I don't drive and we don't

> have a car. My migraines keep getting worse and worse and more

> frequent and more frequent, but still no one listens to me, they

> won't try a new med, they won't do a scan, nothing. I have

> persistant tachycardia, recurring chest and neck pain and high

> triglycerides and they will not do any tests on my heart because

> " you're young, there shouldn't be anything wrong with your heart "

> I'm on medication for diabetes and nobody has ever told me I have

> diabetes. My doctors don't listen and my hands are bound, I have

> screamed and cried and I don't know what to do.... so this all

> leads to yesterdays' appt.

>

> I went in to see the PA and had my lab work drawn, it took 4

> picks to get it, which already started me off on a bad note. The

> one thing I wanted to talk to the PA about was taking Humira, I was

> concerned with that, since I always seem to be fighting off

> infections as it is and the side effects that are listed for it,

> scare that crap out of me. I also told her my plastic surgeons

> concerns and my primary's concerns.... her response " you pay us to

> make these decisions " " just because your plastic surgeon has RA

> doesn't mean he knows about it " " side effects that are listed on

> meds are nonsense, they only put them there because they have to,

> don't pay attention to them " " you should stop reading so much,

> because obviously you don't know what you are talking

> about " (concerning humira/lymphoma)

> When I told her I felt like my primary doctor was listening to me

> becaue I wasn't receiving proper pain management and not sleeping

> because he won't up my sleeping meds she said " thats nonsense "

> " he's a good doctor " " its not his job to treat your RA "

> regarding the sickness I got from the MTX pills " I think you just

> had a stomach bug " " if you keep complaining about side effects

> we're not going to be able to treat you " " we're running out of

> options, you have two left, or you can just go home and die "

>

> Well, excuse my language, but I finally lost my shit. I started

> screaming and it came out something like this.

> nobody ever listens to me, Dr. Mccahill never listens to me, and

> right now you aren't even listening to me. I had to threaten

> suicide before he would even do bloodwork on me and lo and behold

> WOW, something was wrong, lots of somethings actually. I'm in pain,

> I'm sick all the time and these medications I'm taking sometimes

> help and sometimes don't, so excuse me if I analyze all of them,

> but its my body you are putting them into and its my body that is

> sick and its my body that will pay the price. I never feel good, I

> never sleep, my doctor says that most of my pain is RA related, you

> say its not, so you can pass me off on each other and no one does a

> damn thing to help me and in the meantime I have a baby boy growing

> up at home that I can even pick up.

>

> to which she replied... " well what are YOU doing that makes you

> sick all the time "

>

> and I said....WHY DON'T YOU TELL ME, YOU'RE THE ONE WITH THE

> DEGREE, " YOU'RE THE ONE I'M PAYING " you're the one who's so smart

> and thinks I don't know what I'm talking about so please tell me

> why I'm sick all the time because lady, I'd rather be dead and with

> god then alive with someone like you.

>

> well, after my outburst, her attitude turned around a bit, but

> not enough to suit me, I'm so lost and I don't know what to do. I'm

> supposed to go back there today to learn how to self inject my MTX.

>

> I'm 28, I have no teeth, I'm fat because I can't get around well,

> I have two kids that deserve better and a fiance that works his

> butt off 6 days a week bringing home $300 a week to support a

> family of four. I have nothing to offer him anymore, I at least

> used to have my sense of humor and that has absolutely died on me.

> I just can't take this. My life consists of doctors appts and 15

> medications and this year alone I've had 4 surgeries. Christmas is

> coming and I have nothing to offer anybody. I know that God is only

> supposed to give us what we can handle, but I can't handle this

> anymore and I need him to stop it, I just need it all to stop.god

> bless all of you.

>

> kerri sue

>

>

> ---------------------------------

> FareChase - Search multiple travel sites in one click.

>

>

[Guest guest]

Ebony,

thank you for you throughts and prayers. I have been considering counseling

and did ask my GP for a referral and he said he'd rather not give me one. go

figure. I have actually started to write a book, so its funny you should say

that. See, right now, my mother is dying which is a very strange thing for me

because I suppose I should be sad, but instead its just very unpersonal. I'm not

sure how to explain it. I promised myself, I would never be her and my children

would never turn out like me. So far, so good, but instead of exploding such as

she did, I implode and my tendency is to hurt and hate myself. I'm trying to

figure life out right now, I know there must be a lesson in all this somewhere,

I just need to find it. Thank you for your kind words.

kerri sue

stillbreathing29 <stillbreathing29@...> wrote:

Wow Kerri!!!

I am not here often but your post made me stand up and pay attention,

that's for sure. Wow! I am speechless. My heart goes out to you.

I can't even explain how I feel after reading your post. I just know

noone should go through this much pain and torture. I will pray

really hard and a special prayer for you. I want to do something for

you, but I am in a crazy situation myself. But I will always keep

you in my mind and heart, always wishing good things for you. You

must be going for the gold medal in heaven because it is unreal how

you have described things. And you still have your sense of humor,

it shows in your very serious message. You are doing great under

those circumstances. Your attitude is great. I almost want to

suggest counseling only because this is so overwhelming for you to be

gong through alone and it sounds like you are alone, for the most

part, but of course you have this web site. If you live near me, I

can babysit or grocery shop for your or do something. I don't know

what but try to ease the pain a little. I live in Atlanta if you

don't live near me and don't want to reveal your location just say no

you don't live near me because you can never be too careful dealing

with people over the internet.

Also, you can also keep a journal instead of seeing a counselor and

sometimes you can figure things out on your own. Or you can do

both. They can't make the pain go away and noone can and that is all

that will get rid of the depression other than more drugs. Don't get

me wrong some of the meds work for some people so they are a godsend

for some. I am not knocking them but you sound like you are very

sensitive to meds, so journaling is a healthy, nontoxic way to vent

and also, to start your bestseller because you need to write a book

about your life and with your sense of humor, you are the best person

to talk about RA and maybe educate some of those healthy folks out

there about what we go through everyday. They really have no clue.

I am still recovering as well from hospitalization and blood clot in

the lung, swoolen lymph nodes, and cat scratch fever, kidneys

failing, and on and on, etc. so I feel I understand what you are

going through but you have been through so much more and at such a

young age. I'm 41 now but this nightmare started at 31-- in my

prime. My heart goes out to you. You will definitely be in my

prayers.

Take care. Many blessings to you.

love and peace to all,

Ebony

[Guest guest]

babs,

thank you so much for your encouragement. It has been a very difficult few

years and I'm just wearing down. I will keep trucking. Thank you for your

thoughts and prayers.

kerri sue

jmorob@... wrote:

Hello Kerri sue

Hi, I haven't participated for a while because I'm back at work since summer

break but your post really upset me. I'm sorry things have been going so badly

for you and I don't really know if I have any advice other than to hang in

there.

I know this may sound trivial but your kids need you no matter what

condition you are in. They need your advice, wisdom, and love. Don't worry to

much

about the letting loose with how you feel at the doctors. They probably

needed to hear it. Sometimes people in the medical field become hard/cold and

need

a wake-up call as to how they are treating people (I convinced that most of

the time they aren't even aware). Anyway I hope you can take a deep breath and

look at how much people need you. Don't give up as things will get better.

Take Care

Babs

[Guest guest]

i have never lost any hair

kathy in il

[Guest guest]

Oh dear, Kerri, I'm sorry I took so long to reply to this, and I don't know who

else has already replied to you or what they've said because I'm starting at

the bottom of a 218 e-mail list and working my way down. My internet is down.

Some day the doctors who treat you like doo doo are going to answer for the

pain and mental anguish they have caused. Some day they're going to have to

beg your forgiveness in front of God, as will the other people who have harmed

you. I really believe that. In the meantime, I wish I could make things

better. I can identify with the unexplained vaginal and bladder pain that

feels like you have a curling iron where the sun don't shine, and I can

identify with your experiences with doctors because that's what I've

experienced too. The rest I can only hope someone else in the group knows what

to say to help you make it better. I can't even imagine. I really care about

you and I hope that you get some emotional and physical relief soon.

The way I finally started dealing with doctors is to write out a one-page

sheet outlining where I've been and what I expect him/her to accomplish. It

ticks them off, but they can't blow you off. One doctor threw my paper down

and said, " I ought to charge you 300 bucks for just having to read this " but

then he proceeded to address my true concerns and he can never try to pretend I

didn't tell him something.

I don't know what to say to make things better, but please hang in there.

I pray that you'll have a peaceful week.

laura

kerri paquette <ksp2242@...> wrote: First let me explain a few

things.... the way my rheumy sees patients is every other month and in between

those appts, you see his prescribing PA who follows your meds and makes sure

your blood work is done. Yesterday I had an appt with the PA.

As many of you know I'm a little over three months post op now, recovering

from breast reduction surgery. Recovery has been long and as of now, I still

have open wounds, my plastic surgeon who performed this surgery also has RA.

About five years ago I noticed that every night when I got into bed I was

hurting more than usual, I was having a hard time doing anything other than

work and taking care of my daughter, I had no energy for anything. My marriage

was falling apart, my husband was a drinker and he never dealt well with health

problems which I have had plenty of. I have a history of OB/GYN problems,

kidney stones, migraines, anxiety and had dealt with a case of " cat scratch

fever " as a kid prompting the removal of several lymphnodes from the right side

of my body thereby making me very prone to catching anything from a cold to

pneumonia. During the winter of 2000-2001 I was coming home from work at 4 in

the morning in below zero temperature and my front door was frozen shut, so I

leaned into it a few times and slammed through the door to get it open. Long

story short, I injured my shoulder and dislocated my first rib.

In July of 2002, I went into the ER with excruciating pelvic pain, they

could find no cause, so they gave me percocet and sent me home. I returned 6

hours later unable to walk the pain was so bad, they admitted me my white count

was elevated. They gave me a diagnosis if Pelvic Inflammatory Disease and

admitted me into the hospital with IV antibiotics for 3 days, turns out they

were wrong, I was passing a kidney stone and the antibiotics they were giving

me were not supposed to be given to someone with kidney problems or stones,

needless to say, I got sick. When I finally returned home, I slept on the

couch almost non-stop. Two days later, I awoke to hear my husbands' alarm

clock going off in the bedroom, as it was 9, I knew he was late for work, so I

went in to wake him up. He was still drunk and went crazy, he tried to strangle

me and he beat me while my daughter watched. My neighbors called the cops and

He was arrested and removed from the home. When I was

growing up at home, it

was me, my sister and my mother. The best way for me to explain my childhood

is this. When I was 7, my mother made my sister and I eggs for breakfast. Well

you know when the white part gets runny when it isn't cooked all the way? I

didn't like that, it reminded me of snot, so I ate all around it and all inside

it, but not that part, my mother told me, I wasn't getting up from the table

until it was done, by this time it was cold, so she stood behind me and hit the

back of my head every minute or so to make me take a bite, finally I gagged on

it and threw up all over my plate and when this happened my mother made me eat

that too. That was my life. When my husband did this, he only need do it once,

no second chance, he was out. The charges were reduced from attempted murder to

disorderly conduct, he had 6 months probation and a $200 fine. At that point my

life spiraled and I never returned to work, my daughter and I had to move out

of our home and into a housing

project, I started

collecting food stamps and welfare and went about trying to figure out why I

never felt good.

In Jan of 2003 I had two cavities in my mouth, I had them filled and went

on my way. About a week later, one of the teeth became severly infected, the

infection traveled into my jaw and surrounding teeth, slowly and much like a

domino type thing, my teeth started falling out... in January of 2004 I had

surgery to remove the rest of my remaining teeth.

Of course, no one ever listened to me and still no one ever does. I took 3

years for my doctor to finally run tests on me and send me to a rheumatologist

and now I still have to beg just to have my anti-depressant increased. I can't

change doctors, the only other ones available are in the same clinic, I don't

drive and we don't have a car. My migraines keep getting worse and worse and

more frequent and more frequent, but still no one listens to me, they won't try

a new med, they won't do a scan, nothing. I have persistant tachycardia,

recurring chest and neck pain and high triglycerides and they will not do any

tests on my heart because " you're young, there shouldn't be anything wrong with

your heart " I'm on medication for diabetes and nobody has ever told me I have

diabetes. My doctors don't listen and my hands are bound, I have screamed and

cried and I don't know what to do.... so this all leads to yesterdays' appt.

I went in to see the PA and had my lab work drawn, it took 4 picks to get

it, which already started me off on a bad note. The one thing I wanted to talk

to the PA about was taking Humira, I was concerned with that, since I always

seem to be fighting off infections as it is and the side effects that are

listed for it, scare that crap out of me. I also told her my plastic surgeons

concerns and my primary's concerns.... her response " you pay us to make these

decisions " " just because your plastic surgeon has RA doesn't mean he knows

about it " " side effects that are listed on meds are nonsense, they only put

them there because they have to, don't pay attention to them " " you should stop

reading so much, because obviously you don't know what you are talking about "

(concerning humira/lymphoma)

When I told her I felt like my primary doctor was listening to me becaue I

wasn't receiving proper pain management and not sleeping because he won't up my

sleeping meds she said " thats nonsense " " he's a good doctor " " its not his job

to treat your RA "

regarding the sickness I got from the MTX pills " I think you just had a

stomach bug " " if you keep complaining about side effects we're not going to be

able to treat you " " we're running out of options, you have two left, or you can

just go home and die "

Well, excuse my language, but I finally lost my shit. I started screaming

and it came out something like this.

nobody ever listens to me, Dr. Mccahill never listens to me, and right now

you aren't even listening to me. I had to threaten suicide before he would even

do bloodwork on me and lo and behold WOW, something was wrong, lots of

somethings actually. I'm in pain, I'm sick all the time and these medications

I'm taking sometimes help and sometimes don't, so excuse me if I analyze all of

them, but its my body you are putting them into and its my body that is sick

and its my body that will pay the price. I never feel good, I never sleep, my

doctor says that most of my pain is RA related, you say its not, so you can

pass me off on each other and no one does a damn thing to help me and in the

meantime I have a baby boy growing up at home that I can even pick up.

to which she replied... " well what are YOU doing that makes you sick all the

time "

and I said....WHY DON'T YOU TELL ME, YOU'RE THE ONE WITH THE DEGREE,

" YOU'RE THE ONE I'M PAYING " you're the one who's so smart and thinks I don't

know what I'm talking about so please tell me why I'm sick all the time because

lady, I'd rather be dead and with god then alive with someone like you.

well, after my outburst, her attitude turned around a bit, but not enough

to suit me, I'm so lost and I don't know what to do. I'm supposed to go back

there today to learn how to self inject my MTX.

I'm 28, I have no teeth, I'm fat because I can't get around well, I have

two kids that deserve better and a fiance that works his butt off 6 days a week

bringing home $300 a week to support a family of four. I have nothing to offer

him anymore, I at least used to have my sense of humor and that has absolutely

died on me. I just can't take this. My life consists of doctors appts and 15

medications and this year alone I've had 4 surgeries. Christmas is coming and I

have nothing to offer anybody. I know that God is only supposed to give us

what we can handle, but I can't handle this anymore and I need him to stop it,

I just need it all to stop.god bless all of you.

kerri sue

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

FareChase - Search multiple travel sites in one click.

[Guest guest]

Kerri Sue,

I just read your post...I know I don't know you, but my heart is

broken for you!! Your story sounds so similar to mine as far as

getting diagnosed & getting medical attention, etc. How disgusted

doctors and so-called specialists make me sometimes!!

I started keeping a physical journal...I literally try to write in

it EVERY DAY...what I'm feeling, whether it's a good day, bad day,

etc. I number them on a scale of one to ten, with ten being

worst...I number everything. I keep track of pain & where it's

hurting (1-10), the nausea (1-10), exhaustion (1-10)...you get the

idea. Every time I go see my doctor, I hand him my journal. At first

he seemed a little disgusted by it, but now he realizes how

important it is. It took me over 6 years to get diagnosed with MS...

I was even told by my then family doctor (I have since FIRED HIM!)

that it was all in my head & I needed to see a trained professional,

as in psychiatrist! Ugh! That's about the same time I started

keeping the journal.

I don't always have the energy to write every day, but I write at

least 3 days per week. It really has helped. My symptoms can be so

bizarre & vary greatly day to day (except the pain, fatigue &

nausea...it just never leaves)...I had to do something to keep track

of my body! LOL!

I'm with you...hang in there!

Cami

First let me explain a

few things.... the way my rheumy sees patients is every other month

and in between those appts, you see his prescribing PA who follows

your meds and makes sure your blood work is done. Yesterday I had

an appt with the PA.

>

> As many of you know I'm a little over three months post op

now, recovering from breast reduction surgery. Recovery has been

long and as of now, I still have open wounds, my plastic surgeon

who performed this surgery also has RA.

>

> About five years ago I noticed that every night when I got

into bed I was hurting more than usual, I was having a hard time

doing anything other than work and taking care of my daughter, I

had no energy for anything. My marriage was falling apart, my

husband was a drinker and he never dealt well with health problems

which I have had plenty of. I have a history of OB/GYN problems,

kidney stones, migraines, anxiety and had dealt with a case of " cat

scratch fever " as a kid prompting the removal of several lymphnodes

from the right side of my body thereby making me very prone to

catching anything from a cold to pneumonia. During the winter of

2000-2001 I was coming home from work at 4 in the morning in below

zero temperature and my front door was frozen shut, so I leaned

into it a few times and slammed through the door to get it open.

Long story short, I injured my shoulder and dislocated my first

rib.

>

> In July of 2002, I went into the ER with excruciating pelvic

pain, they could find no cause, so they gave me percocet and sent

me home. I returned 6 hours later unable to walk the pain was so

bad, they admitted me my white count was elevated. They gave me a

diagnosis if Pelvic Inflammatory Disease and admitted me into the

hospital with IV antibiotics for 3 days, turns out they were wrong,

I was passing a kidney stone and the antibiotics they were giving

me were not supposed to be given to someone with kidney problems or

stones, needless to say, I got sick. When I finally returned home,

I slept on the couch almost non-stop. Two days later, I awoke to

hear my husbands' alarm clock going off in the bedroom, as it was

9, I knew he was late for work, so I went in to wake him up. He was

still drunk and went crazy, he tried to strangle me and he beat me

while my daughter watched. My neighbors called the cops and He was

arrested and removed from the home. When I was

> growing up at home, it

> was me, my sister and my mother. The best way for me to explain

my childhood is this. When I was 7, my mother made my sister and I

eggs for breakfast. Well you know when the white part gets runny

when it isn't cooked all the way? I didn't like that, it reminded

me of snot, so I ate all around it and all inside it, but not that

part, my mother told me, I wasn't getting up from the table until

it was done, by this time it was cold, so she stood behind me and

hit the back of my head every minute or so to make me take a bite,

finally I gagged on it and threw up all over my plate and when this

happened my mother made me eat that too. That was my life. When my

husband did this, he only need do it once, no second chance, he was

out. The charges were reduced from attempted murder to disorderly

conduct, he had 6 months probation and a $200 fine. At that point

my life spiraled and I never returned to work, my daughter and I

had to move out of our home and into a housing

> project, I started

> collecting food stamps and welfare and went about trying to

figure out why I never felt good.

>

> In Jan of 2003 I had two cavities in my mouth, I had them

filled and went on my way. About a week later, one of the teeth

became severly infected, the infection traveled into my jaw and

surrounding teeth, slowly and much like a domino type thing, my

teeth started falling out... in January of 2004 I had surgery to

remove the rest of my remaining teeth.

>

> Of course, no one ever listened to me and still no one ever

does. I took 3 years for my doctor to finally run tests on me and

send me to a rheumatologist and now I still have to beg just to

have my anti-depressant increased. I can't change doctors, the only

other ones available are in the same clinic, I don't drive and we

don't have a car. My migraines keep getting worse and worse and

more frequent and more frequent, but still no one listens to me,

they won't try a new med, they won't do a scan, nothing. I have

persistant tachycardia, recurring chest and neck pain and high

triglycerides and they will not do any tests on my heart

because " you're young, there shouldn't be anything wrong with your

heart " I'm on medication for diabetes and nobody has ever told me

I have diabetes. My doctors don't listen and my hands are bound, I

have screamed and cried and I don't know what to do.... so this all

leads to yesterdays' appt.

>

> I went in to see the PA and had my lab work drawn, it took 4

picks to get it, which already started me off on a bad note. The

one thing I wanted to talk to the PA about was taking Humira, I was

concerned with that, since I always seem to be fighting off

infections as it is and the side effects that are listed for it,

scare that crap out of me. I also told her my plastic surgeons

concerns and my primary's concerns.... her response " you pay us to

make these decisions " " just because your plastic surgeon has RA

doesn't mean he knows about it " " side effects that are listed on

meds are nonsense, they only put them there because they have to,

don't pay attention to them " " you should stop reading so much,

because obviously you don't know what you are talking about "

(concerning humira/lymphoma)

> When I told her I felt like my primary doctor was listening

to me becaue I wasn't receiving proper pain management and not

sleeping because he won't up my sleeping meds she said " thats

nonsense " " he's a good doctor " " its not his job to treat your RA "

> regarding the sickness I got from the MTX pills " I think you

just had a stomach bug " " if you keep complaining about side effects

we're not going to be able to treat you " " we're running out of

options, you have two left, or you can just go home and die "

>

> Well, excuse my language, but I finally lost my shit. I

started screaming and it came out something like this.

> nobody ever listens to me, Dr. Mccahill never listens to me,

and right now you aren't even listening to me. I had to threaten

suicide before he would even do bloodwork on me and lo and behold

WOW, something was wrong, lots of somethings actually. I'm in pain,

I'm sick all the time and these medications I'm taking sometimes

help and sometimes don't, so excuse me if I analyze all of them,

but its my body you are putting them into and its my body that is

sick and its my body that will pay the price. I never feel good, I

never sleep, my doctor says that most of my pain is RA related, you

say its not, so you can pass me off on each other and no one does a

damn thing to help me and in the meantime I have a baby boy growing

up at home that I can even pick up.

>

> to which she replied... " well what are YOU doing that makes

you sick all the time "

>

> and I said....WHY DON'T YOU TELL ME, YOU'RE THE ONE WITH THE

DEGREE, " YOU'RE THE ONE I'M PAYING " you're the one who's so smart

and thinks I don't know what I'm talking about so please tell me

why I'm sick all the time because lady, I'd rather be dead and with

god then alive with someone like you.

>

> well, after my outburst, her attitude turned around a bit,

but not enough to suit me, I'm so lost and I don't know what to do.

I'm supposed to go back there today to learn how to self inject my

MTX.

>

> I'm 28, I have no teeth, I'm fat because I can't get around

well, I have two kids that deserve better and a fiance that works

his butt off 6 days a week bringing home $300 a week to support a

family of four. I have nothing to offer him anymore, I at least

used to have my sense of humor and that has absolutely died on me.

I just can't take this. My life consists of doctors appts and 15

medications and this year alone I've had 4 surgeries. Christmas is

coming and I have nothing to offer anybody. I know that God is only

supposed to give us what we can handle, but I can't handle this

anymore and I need him to stop it, I just need it all to stop.god

bless all of you.

>

> kerri sue

>

>

> ---------------------------------

> FareChase - Search multiple travel sites in one click.

>

>

[Guest guest]

Oh I hope you're able to move and can find doctors that truly care

and will treat you with the respect that you deserve.

I wish they would realize that being sick isn't a choice we made.

That is why you can't be disappointed in yourself. It

wasn't your choice and it isn't something you have control over. It

saddens me that I had to drop out of college and

never finished my nursing degree, but it wasn't my choice. Getting

mad is normal. It's not fair what's happened to us.

But no matter how bad I think my life is, there are so many others

that have it so much worse.

a

On Nov 20, 2005, at 9:39 AM, kerri paquette wrote:

> a,

>

> thank you for your kind words. I take the antidepressant Celexa

> and nortriptyline and topamax to sleep, but they aren't helping,

> and I've told my GP and my Rheumy that, but apparently thats not

> important because they haven't offered anything else. I have

> another appt with my GP on the 2nd and I will try again. My fiance

> and I are considering a move which does rely on him being able to

> transfer within his company...if he can do that we may be able to

> get to a bigger place where there are more doctors and better

> health care. The people around here look at me like I am nothing.

> You know, no teeth, 200 lbs, limp, on welfare... but they don't see

> me for who I am, that I have an IQ of 148 and learned to read out

> of my mother's abnormal psychology books and that I know what they

> are thinking behind judgemental eyes. I look back years ago when I

> had graduated from high school at 16 and was accepted to

> Northeastern Univeristy and now the only thing I have left is what

> is in my brain an most of the drugs I take are frying that away

> every day. I'm dissappointed in myself for where I am now and

> disappointed in the people around me who I should be able to depend

> on. I'm sure I'll be alright, but I guess sometimes you just have

> to get downright mad. thank you for letting me vent.

>

> kerri sue