Re: Sandie/RA docs

[Guest guest]

Sandie, are you taking fish oil? I just read today that it really

does help immensely with inflammation, and 2 or 3 grams a day can

help considerably. I'm beginning it tomorrow. My hubby has been after

me for quite some time, but I just read a good article today in a

nutrition magazine and thought it was time to add it to my daily

routine. Along with more water, and back on my probiotics.

Best of course is to eat a lot of salmon and tuna, but we all know

that isn't always so easy to do.

The word " complicated " describes AI diseases quite well. My docs are

always trying to bounce me around and let someone else figure me out.

I read a lot on the internet and do a lot of research to help myself.

I really like my rheumy, but it's hard to get an appointment, even

after 5 years with him. They don't call if there are cancellations,

you have to call them. And while they're always pleasant to me when

I'm there I don't feel that they're trying very hard to help me out

when I need it. And he's one of the GOOD doctors!!! LOL!

The main reason I quit taking the immunosuppressants was because I

was constantly ill with upper respiratory infections, and even got

shingles and whooping cough. Because I was immno suppressed I

couldn't fight off these illnesses. I spent about 8 months of the

year in bed or the hospital. Since I quit all the drugs I haven't

been ill once, and no hospital visits. 2 years of being on my feet

nearly every day....YAY!!! And while there has been some progression

of the PF in the past year (according to the Doc whose nurse couldn't

quit talking about her boyfriend) I will accept some progression if

it means no hospitals or having to be in bed for weeks on end.

I'm one of the folks who believe in quality of life, even if it means

not as much quantity of life. And that is only MY opinion and how I

feel.

After the horrible, nasty, excruciating bout of shingles I swore that

I would NOT be immuno suppressed again. Seriously, I would rather

give birth to a 12 pound baby with no meds rather than go through

shingles again. I still have dead nerves on my back and under my arm.

They still itch and drive me crazy, and it's been nearly 4 years

since I had the shingles.

Your rash does concern me. I wish it would concern one of your

doctors. I'm not sure what it would take to fix the medical

profession in this country.

Please keep me informed on your doctor visits, your tests, etc. I am

so upset for you that you're not receiving answers and that you're

being treated as if you're loopy. It took me a long time to learn to

speak up for myself with the Docs. I always thought they were such

Gods and must know everything. Turns out they're only human, full of

themselves, and sometimes need to be schooled by the patient.

Keep after them to help you. I will be praying for you, very hard!

Best wishes, and big hugs!

Babs in Texas

>

> Babs yes I do have a RA doc and switched a couple of years ago. My

> old ra doc wasnt ever good at listening to me even to the point I

> siad you dont listen to me. When I would ask about new treatments

or

> tell her this isnt working or that isnt working. The biggest reason

i

> did switch is my ex-father-in-law was diagnosed with RA around the

> same time as me, some how we managed to get the same RA doc. Well

2

> years ago he died of RA in the lungs. I think she could have saved

> him had she been monitoring him like running the xrays and checking

> the feet and hands etc. The entire time I was there I dont think

she

> ever ran an xray on me accept for me feet and hands because those

> were really bothering me. So after he died I just felt really

> uncomfortable we wont talk about the two times in a row I went to

see

> her and was falling over sick and she didnt do anyting both times I

> was admitted to the hospital that same day, she would call me and

say

> oh my gosh I am so sorry. Whatever lady!

>

> I have no deformaties and I only got nodules twice before way back

in

> the beginning.

>

> I find with this RA doc she likes the status quo and i have to give

> her things to try she doesnt take the initiative to find things or

> anything. it is the same thing with all my docs nobody wants to

hunt

> for things or go finding them. I like the ra doc because she takes

> her time and listens to me but isnt easily availalbe and will be

> retiring I am sure within the next several years.

>

> My gp doc is the one I made run all the lupus tests for me years

ago

> I dont know which ones she ran, but I am going there today and

having

> her run them again. See I would think the RA doc would be saying

> lets check what you got here and run everything but she never does,

> she always checks the regular labs, CBC with Diff, the liver

> functions, thats its.

>

> Every where I go people just say I am complicated and no one wants

to

> find out whats going on with me. The ra doc did say she would send

> me to a immunalogist, then the mayo docs say to get to an

infectious

> disease doctor, and then the ra doc is upset with the mayo's

> recommendation for meds because he said rituxin is the only one I

> should use after these one pills if those dont work, she says

rituxin

> is a b killer and b cells are what you use to fight infection so

how

> could you give someone who cant fight infection already a drug like

> that? Which if thats the case then why? Because you get it only

> twice a year compared to every 4 weeks? I dont know but you get to

> the point that you dont know who to trust and maybe they are just

> passing the buck back and forth and maybe your just making this all

> up. The rash is like a redness to my face that covers both my

> checks and over the bridge of my nose, it feels a little different

> then the rest of my skin. I found pictures of the malar rashes and

> there are several out there that mine look like, mine isnt the

> extreme that most of them are. and for the most part its always

there

> yet no one pays attention when I tell the docs they say nothing, my

> face has always been kind of flushed in the checks and nose area.

>

> I dont know what I do know is I am tired of suffering and I am

tired

> of no one listening to me. So I am going over to the infectious

> disease people because I need to find something out and I need them

> to test until they find something because everytime i start

> medication for the RA I end up in the hospital with a major

infection.

>

> Thanks for your answers. I did know they were different and new

> lupus effected the organs but I was trying to see what kinds of

> things happened to you with the mouth and teeth and all that to see

> if it was similar to what I have been experiencing.

>

> Thanks a million!

>

> Sandie

> suffering succotash, WI 2007, 37

[Guest guest]

Thanks Babs yep take fish oil every single day and it does work been

taking it for several years and it really does make a difference.

Yeah like I said to Joyce I am just going to do a few more things

then I am done seeing doctors, enough is enough and I guess I will

have to wait until something major happens.

I have my RA doc looking to see what to put me on the methotrexate

isnt enough and I am so sore all the time I cant stand it anymore. I

am not sure what she will try but we will see. I do understand where

your coming from on the immunosuppressing drugs but I need to be able

to get out of bed and stay moving throughout the day. And the

biggest part I have to work still so I need to function because I

have been dragging lately and I cant function like this anymore. I

am worried about the being sick all the time. Since I havent had the

immunosuppressing drugs accept the metho I have had 2 sinus

infections instead of several facial infections and then there is of

course all this breathing issues etc. So who knows just have to wait

and see what happens I guess.

Thanks for listening!

Sandie

suffering succotash, WI 2007, 37

> >

> > Babs yes I do have a RA doc and switched a couple of years ago.

My

> > old ra doc wasnt ever good at listening to me even to the point I

> > siad you dont listen to me. When I would ask about new

treatments

> or

> > tell her this isnt working or that isnt working. The biggest

reason

> i

> > did switch is my ex-father-in-law was diagnosed with RA around

the

> > same time as me, some how we managed to get the same RA doc.

Well

> 2

> > years ago he died of RA in the lungs. I think she could have

saved

> > him had she been monitoring him like running the xrays and

checking

> > the feet and hands etc. The entire time I was there I dont think

> she

> > ever ran an xray on me accept for me feet and hands because those

> > were really bothering me. So after he died I just felt really

> > uncomfortable we wont talk about the two times in a row I went to

> see

> > her and was falling over sick and she didnt do anyting both times

I

> > was admitted to the hospital that same day, she would call me and

> say

> > oh my gosh I am so sorry. Whatever lady!

> >

> > I have no deformaties and I only got nodules twice before way

back

> in

> > the beginning.

> >

> > I find with this RA doc she likes the status quo and i have to

give

> > her things to try she doesnt take the initiative to find things

or

> > anything. it is the same thing with all my docs nobody wants to

> hunt

> > for things or go finding them. I like the ra doc because she

takes

> > her time and listens to me but isnt easily availalbe and will be

> > retiring I am sure within the next several years.

> >

> > My gp doc is the one I made run all the lupus tests for me years

> ago

> > I dont know which ones she ran, but I am going there today and

> having

> > her run them again. See I would think the RA doc would be

saying

> > lets check what you got here and run everything but she never

does,

> > she always checks the regular labs, CBC with Diff, the liver

> > functions, thats its.

> >

> > Every where I go people just say I am complicated and no one

wants

> to

> > find out whats going on with me. The ra doc did say she would

send

> > me to a immunalogist, then the mayo docs say to get to an

> infectious

> > disease doctor, and then the ra doc is upset with the mayo's

> > recommendation for meds because he said rituxin is the only one I

> > should use after these one pills if those dont work, she says

> rituxin

> > is a b killer and b cells are what you use to fight infection so

> how

> > could you give someone who cant fight infection already a drug

like

> > that? Which if thats the case then why? Because you get it only

> > twice a year compared to every 4 weeks? I dont know but you get

to

> > the point that you dont know who to trust and maybe they are just

> > passing the buck back and forth and maybe your just making this

all

> > up. The rash is like a redness to my face that covers both my

> > checks and over the bridge of my nose, it feels a little

different

> > then the rest of my skin. I found pictures of the malar rashes

and

> > there are several out there that mine look like, mine isnt the

> > extreme that most of them are. and for the most part its always

> there

> > yet no one pays attention when I tell the docs they say nothing,

my

> > face has always been kind of flushed in the checks and nose

area.

> >

> > I dont know what I do know is I am tired of suffering and I am

> tired

> > of no one listening to me. So I am going over to the infectious

> > disease people because I need to find something out and I need

them

> > to test until they find something because everytime i start

> > medication for the RA I end up in the hospital with a major

> infection.

> >

> > Thanks for your answers. I did know they were different and new

> > lupus effected the organs but I was trying to see what kinds of

> > things happened to you with the mouth and teeth and all that to

see

> > if it was similar to what I have been experiencing.

> >

> > Thanks a million!

> >

> > Sandie

> > suffering succotash, WI 2007, 37

>