Re: Re: Hi- Another Confused Newbie! :)

[Guest guest]

Toni,

What a great ideas about rheumy. I will use some of these myself.

thanks,

aclavern33@... wrote:

Hello ,

Welcome to the group. I am a sort of newbie too. I was diagnosied over a

year ago...and my doc moved away. I got a new doc and I understand completely

what you are going through. I am in the same situation. There is no one else

for me to see either because of my insurance.

Here are some suggestions that worked for me. Go with a list of questions and

problems. You can also fax those to your doc the day before you appnt so she

can review any concerns your have ahead of time. Make a list of medication

needs such as new prescriptions. You can also fax that list the day before.

Make sure the most important issues are discussed FIRST! You many not be

able to get everything discussed but at least your most important concerns can

get addressed.

Call her on her behavior!!!! Eye rolling..ignorring. I would tell her that

you are paying her and would like a fair share of her time. You don't

appreciate her ignorring or eye rolling. If she can't fullfil you needs then

you

need to report her to the medical board and to your insurance. You may not need

to go this far...sometimes just making the doc stop and listen is enough.

Make sure you are always early for your appnts...ask how long is you appnt

slot time! This will give you a clue.

Ask about pain meds..tell her you have tried it her way and it did not work

now you would like something for pain. If you are looking to be painfree..you

may have expectations that can not be met. Most docs seem to start out with

COX-2 like celebrex, vioxx or bextra. Then if that is not enough they add

Ultram or Ultracet.

When you first start out they don't like to add a lot of pain meds because

they want to know how the meds are really working which can me masked if you are

taking a bunch of pain meds.

If you are having problems keep things straight take someone with you to your

appnt....two pairs of ears are better than one. that person can also take

notes when the doc gives you answers.

If she goes to fast MAKE her slow down by asking her to repeat herself.

Ask for copies for you lab results....you may want copies of your records as

well.

Most of us also take meds for depression as well as sleep. Chronic pain

makes it difficult to sleep as well as cause depression. Discuss this with your

internist. If you don't have a good internal med doc..now is the time to get

one.

Keep a dairy of your symtoms, pain, meds response and feelings. I did that

for about two months...it helped and showed my doc patterns of pain. He was

able to compare that with my lab results.

May meds that treat RA have lots of side effect such as diarrhea. But stress

and lack of sleep can also cause or make diarrhea worst.

You also need frequent eye exams while on plaquineil...you doc should have

told you this...I believe its every 6 months.

I go for blood work every 2-4 weeks depending on what the previous results

looked like. I am current on Enbrel, MTX, Prednisone, Bextra, folic acid must

have while on MTX, prozac, flexeril for sleep, ultram for pain, multi-vit,

calcium with vit-D must have if on prednisone and prevacid.

I take the following suppliments which were recommended as helping from the

Arthritis Foundation: evening primrose oil, fish oil, green tea, vit-e,

magnesium, and zinc.

I use the following topical rubs: Biofreeze, Sombra and Kool n' Fit which

work really well for me.

I also sleep in nite wrist splints because I have carpel tunnel caused by my

RA.

It has been a very long road for me and I am still not stable as far as pain,

swelling and range of motion. My doc told me my last visit he thinks this is

the best I am going to get.

I would also suggest with two small children you learn to pace yourself.

Take advantage of mother's mornings out or if you can get a babysitter to watch

the kids so can rest at least two days a week.

My doc also recommended PACE or water exercise when I feel good..no classes

in my area. He also sent me for occupational and physical therapy. I went home

with some exercise bands, balls and some good ideas.

If none of this helps with your Rheumy, talk to your internist about your

concerns...sometimes they will call the rheummy and let them know you are

getting

frustrated. I had to do that and it did help.

ok..you have lots to do now! LOL I hope I have helped.

Toni in Texas

In a message dated 1/16/04 5:47:27 PM Central Standard Time,

writes:

> Message: 3

> Date: Fri, 16 Jan 2004 05:18:10 -0000

> From: " D. " <sedalfrey@...>

> Subject: Hi- Another Confused Newbie!

>

> Hello all- Been lurking, enjoying the chats, information, jokes,

> cheering good news and crying for the bad news. Time to introduce

> myself! I am D., 39 years old, live in south Louisiana,

> SAHM, 2 boys (ages 4 and 2), married to Shaun. I am really

> confused/overwhelmed with all the information on treatments. I

> understand the RA disease (diagnosed 5 months ago), but other than

> that, have no clue.

>

> Crummy RA Dr.! Only game in town right now. My Internist refered me

> on to her. Boo! I go to see another Internist next week. The Ra

> Dr.- very negative (I feel like I should just roll on over dead

> according to her- no cure, no hope, she does not believe in pain

> meds., etc); she is very cold and impersonnal (I don't think that I

> have to be best buddies, but think that I should have some sort of

> rapport)- appointments consist of 15 minutes of her yanking me around

> and then tossing RX's at me. She actually rolls her eyes when I ask

> a question- I do not think that asking medication side effects is

> over then line. Anyway, I do not think that I will be seeing her

> agian. I am currently on Relafen and Plaquenil.

>

> Have to wonder about other treatments- according to RA Dr. " None of

> that other stuff (aupuncture, supplaments, herbs, etc) works at all " .

>

> I have IBS and take meds for it. (Anyone know of a coilation here?).

> The RA meds are really messing that up! How do I know that RA Dr.

> has even got the right diagnosis? She did offhand mention when I

> kept asking about some finger pain near the tips, that I also had

> Osteoarthritis. Asked about horrible hip pain I have been having

> (like barely walking pain) and she blew it off.

>

> All seems so surreal to me. How did you all get to the bottom of

> this? Do you all like your Dr.'s and feel comfortable with them?

>

> Oh, how I go on! Anyway, glad to 'meet' all of you. Look forward to

> learning and sharing. Here's to good Health! ELizabeth

>

[Guest guest]

,

Both red and white " whine " are enjoyed here-seriously, though this dr. sounds

incompetent.

" D. " <sedalfrey@...> wrote:

Thank you all for the Welcome and support! I am going to try a new

Internist on Tuesday. And have an appointment in March with a

Pain Management Dr. The current RA Dr. freaks me out! I have seen

her 3 times and am still not impressed. Again, she just tosses RX's

at me and states that there " are no side effects " . I beg to differ.

The very first med. she gave me, really scared me! Trilisate. Dh was

at work, just me and the 2 kids. Within 20 mintues of me taking it,

I got nauseous, pounding headache, vomiting, diarreaha, and started

to have trouble breathing. Both kids crying, me crawling into the

kitchen to get Benedryl. Took a big handful dry and just layed there

until I recovered enough to get up and clean up the mess that I had

made. Scarey. As this was a Friday, I took no more of it and

called her office on Monday morning. Had to leave message with

Recpt. Late that day Nurse called me back and said that she would

talk with Dr. FRIDAY- still no word. I called back. Same drill.

Nurse called me late that afternoon, pulls chart and tells me that

she assumes that Dr. got her note as the chart was back filed. Asked

me if I was still taking it. Huh???? Said that Dr. had left no

notes. (Ok, at the appt. on the Thursday before, Dr. said how

important it was for me to take meds.) Said that she would leave

another note. The NEXT Wed., still no word, so I call back- now

almost 2 weeks have gone by. Nurse tells me that she will talk with

Dr. Friday, my Pharmacy calls to tell me that the Dr.'s office had

just called in Bextra. Gee, Thanks for telling me RA Dr.

So, 2 weeks go by before an allergic reaction is dealt with. Is this

how your Dr.'s are? Am I just crazy? I think that having trouble

breathing rates up there and should be addressed. The next appt. I

had with the RA Dr., I asked about the allergic reaction and she just

shrugged. I have alot of anger toward this lady!

Thanks for letting me " whine " ! Think that i'll go eat some chese to

go with it. D.

> > All seems so surreal to me. How did you all get to the bottom of

> > this? Do you all like your Dr.'s and feel comfortable with them?