long post, reached my end * graphic

[Guest guest]

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

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