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jojo-at-the-bux
07-22-2008, 06:33 PM
so i have an appt with my primary care dr on tues, this was the earliest they could get me in. i wanted to know of any specific questions that i can ask them that may help me? i need to learn about all the tests and things so that i can know wt im dealing with i guess. im on 20 mg of prednisone a day, 50 mg of imuran twice a day, and i was on plaquenil twice a day. im out of the plaquenil, have been for almost 2 months, so i think maybe this is y ive been feeling badly? i dont know, i just know that all of u r right, that i have to be very persistent in my care, and make them do wat needs to be done. i just am so scared of being sick,i hope the drs visit goes well.

thankk you all for your support, im glad i found this site

joann

laurid8967
07-23-2008, 07:58 AM
Hi Joanne -
Its actually Wed now, I was wondering how it went? Why havent you taken your Plaquenil in 2 months? Did they tell you to stop, or did you stop it? YES - most feel lousy after they go off of the plaqueinil. It is one of those meds that you cant tell dramatically what its doing for you, but once you go off, you realize how good it was working.
Let us know how it went, OK? Also, how do you like the imuran? Just curious...
Love Lauri

Oluwa
07-23-2008, 08:38 AM
Hi Joanne..

You're appointment is scheduled for next week, eh?

I would make a list...

Of all your medication. When you started to dose.
When you stopped.

Your symptoms. Past Symptoms. When they started when they stopped. Intensity of each symtom.

Any triggers that you know of.

Who diagnosed you previously, where and when? Dates and places.

Previous tests had. Copies of those test. If you do not have them you can obtain them from the doctors office who tested you.

If the new doctor is requesting more tests, ask what the tests are for. When the results are in, always obtain a copy of those results.

Ask for a follow-up appointment to discuss the results and schedule it when you leave on Tuesday.

Ask for referrals to a rheuamtologist or internist.

If prescribed medicine, ask what is it for? How long will you have to take it.

Ask for home treatment suggestions.

Ask if he will treat the symptoms without a proper diagnose, just in case you do not have you previous documentation of a diagnose....to get you back on Plaquenil. Ask for at least 6 month prescription and also ask if you can call him if the prescription it expires to get it renewed.

Bring paper and pencil and write down what s/he says. Someimes appointments, the answers can be overwhelming, moves too fast to remember all that was said.

Don't leave with questions unanswered, don't leave feeling intimidated. No question is silly. Ask what you want so you can understand you care...it is your body.

I would read much as you can absorb about Lupus...online, go to www.lupus .org or http://www.mayoclinic.com/health/lupus/DS00115 prior to your appointment. So you can participate in the conversation, be ready with questions that may come up, understand what s/he is saying..be apart of your own health care.

And know you can come and ask anything here, about anything..if we don't have an answer we will be able to direct you...someone will have an answer...

Hope this helps...enjoy the day...
Be well..hugs,
Oluwa

jojo-at-the-bux
07-23-2008, 10:01 AM
thank u oluwa, thats alot of info, lol i printed it out so i can remember to ask all that.

lauir, my appt is next tues, the reson im not on the plaqenil for awhile is i ran out and have been having so many problems getting to see a dr that i havent gotten anymore. it sux, but i know now that i really have to get them to listen to me or nothing will get done.

like i was saying b4, i was feeling very alone, but this site has helped alot, i read as many of the posts and links that i acn as you all really seem to know wats going on, and if you dont you help us find the way! thank you again, and i will keep posting, i love it here!

Oluwa
07-23-2008, 10:12 AM
Joann..

I just did a quick search at lupus.org on how to prepare for your appointment. It will probably contain a more in depth information and how to express your symptoms than I provided....follow the link..

http://www.lupus.org/webmodules/webarticlesnet/templates/new_aboutdiagnosis.aspx?articleid=1695&zoneid=15

L.,
O.

jojo-at-the-bux
07-23-2008, 11:06 AM
thank you oluwa, i went to the link, more notes for me!!! whew this is alot of stuff to take in, but im glad to be laerning so i can help with my health. thank you again!

how are you feeling today? me i called out sick 2 days last week so this is my first day back to work tonite, becuz my bosss only scheduled me 2 days this week. its sucks, cuz im fine now!! i dont know wat to do abouth the work situation, im fine one min and not the next! i wish thye understood that!

Oluwa
07-23-2008, 11:22 AM
You're welcome Joann...

Lupus is like that...taunting us by the minute. I've have learned through Saysusie life is the moment. I use to think, live it by the day, by the minute..but key is to live in the moment and not dwell on how awful you felt before.

Probably the two day rest did your body good. Is there lots of stress at your place of employment that could be a trigger for a flare?

Make sure you take care of yourself even when feeling fine. When we run ourselves ragged it isn't like another who doesn't have this illness...we pay the piper big time with our health.

Have you visited the forum Lauri's Lounge and looked at the Stickys that are posted in the beginning, 101 how to care for yourself...check it out...

Does working a late shift interrupt you sleep, cause stress...? That can trigger a flare also...Don't over work and take breaks when you can...

Does your place of employment know you have Lupus?

I'm feeling mellow...a tad bored. Too hot to be outside. I pace inside. It has been that way for many recent days. Heat, the sun wreaks havoc on me..probably you too, eh? We melt with symptoms.

Be well,
Hugs
Oluwa

jojo-at-the-bux
07-23-2008, 11:43 AM
well i work at starbucks, lol so im up and all my feet rushing around, and im a shift lead so that a little more stress for me. nite working is wat gets me the most because there are more respnosilbiltys like closing the store and al;l the cleaning. my boss knows wat is wrong, but i dont think he "knows". he just tells me not to worry about my job, but i have to worry when he cuts my hrs like he did bacause i cant pay my bills, therefore adding more stress. catch 22 i swear!

as for the sun, i dont know really, i havent noticed and red or anything, except my face, but ive been like that all my life, which makes me think that ive had this longer than i knew. my cousin had it nad passed away at 19, but i dont know y, my family is not close, but i have to get in touch with them and find out wat i can.

oh yea the sun...sidetracked...i got a flare one day after being at the park with my son so i dont know if it was thta or wat.

its alll confusing!!

Oluwa
07-23-2008, 12:57 PM
Joann..

May I suggest, sitting down with your manager at Starbucks and tell him you appreciate him reducing your hours when you are ill, but you need the hours too. Maybe together you can find a medium...

It probably was the sun..the effect doesn't always occur in an instant. Can take hours or even the next day to feel the wrath of the sun on our Lupus bodies...

Keep covered, use sunscreen and try to limit your time outside, especially during the hours of 10am to 4pm...

Hugs,
Oluwa

jojo-at-the-bux
07-23-2008, 01:07 PM
i will try that today with him, i need him to understand that when im sick im sick, but then the next day sometimes im ok, i guess its just weird to ppl. i mean it is to me too i guess, one day i cant get outa bed and the next im ok? lol wat a buncha baloney!

and the sun, i was just talking to my friend that i went to the park with that day and she said the same thing that she thinks i got a flare up behind it. so im gonna be more careful no matter wat, better safe than sorry.

jojo-at-the-bux
07-23-2008, 01:09 PM
oh lauri asked about imuran, im a little slow some times. i dont know how i like it, i think that y i lost alot of hair? i used to have real thick hair and its thinned out alot, it makes me sad, and it just wont act right!! i think it was the imuran. as for wat else it does for me i dont really know, ima look it up now.

Oluwa
07-27-2008, 07:57 PM
Joann,

How did you talk go with your manager?

Huga,
Oluwa

jojo-at-the-bux
07-29-2008, 06:02 PM
good i guess, he apologized for scheduling me too few hrs, but he said that he just wanted to know that i was feelin better. i explained that it just depends on the day, and he said we will just try and work with it as much as we can