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Old 06-06-2005, 09:41 PM   #1
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Follow-up w/ rheumy

Well I just wanted to pop in and vent a little, I had my 3rd visit with my rheumy my first visit he did all kinds of blood test, x-rays and mri's and on the 2nd visit said he believed I had mild lupus and FM and put me on plaquenil, I went back for my follow up and the plaquenil has helped a lot with my joint pain and swelling but of course that is only a fraction of my symptoms.
I mean I have disorders of the whole spine but have drs for that, I was just really hoping for something more from the rhuemy but he thinks since I'm doing better on the plaquenil he'll see me in 6 months, this is not what I had in mind not only do I want to know more about what is wrong I don't want to just do a little better, ya know.
I know I should seek out another dr and a nother opinion but for many reasons I'm just fed up, I have been on this merry-go-round for 6yrs dealing with all my spine problems and now this and before that it was my heart and heart surgery, I won't even go in to what was before that.
So another bump in the road, wouldn't you say.
I will say though for the first time I had my twin 7 yr old grandaughters to myself for a whole week and that was great they live out of state and this was the first time we were ever able to have time alone togather because of their health issues and mine. I am however paying dearly for it now the pain levels are way up and the fatigue is at a all time low.
I admire all of you with young children at home, I know it must be really hard for you but I do know the rewards are unbelievable.
So this was my pass week.
Hope thatthe rest of you have had a good one.
Linda

 
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Old 06-06-2005, 10:18 PM   #2
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Re: Follow-up w/ rheumy

hi linda,
there are many doctors to choose from. the merry go round is your life. if you bail off who will guide your body? i went thru 17 doctors over 10 years. always searching for the one i have now. if i had given up and taken less than i and my body need where would i be today? i don't even want to imagine. i would be frustrated, in pain and with no feeling of foreward momentum.
remember the old saying, you gotta kiss alot of toads before you find a prince? i love my doctor. she is gentle, listens, and often orders tests and such for my peace of mind. we are a team. together we care for my body.
so glad you got to play with your grandchildren. that is worth being tired for. you can like in bed and smile. you may hurt but oh the fun you had getting there. children are the best of the best in our species.
peace,
bluelakelady

 
Old 06-07-2005, 05:49 AM   #3
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Re: Follow-up w/ rheumy

BLL, I haven't given up yet, just taking a pause til some things here at home settle down. I need to get a few medical bills paid off and see what happens with hubbies job abd ins, before taking of on the trip with finding other drs.
The sad thing is that there is so many drs in our town but none of them have been of any help here so means I have to drive such a distance to get to one of the cities and hubby has used up all his personla and vacation days taking me to apps. that I needed a driver for.
Actually I'm not complaining because I know it could and probably will get worse, I'm working on acceptance pn the fact that this is what will be from now on, not so much with the lupus and FM but with the spine.
Thanks for the uplifting post though, you always have such a great out look.
Linda

 
Old 06-07-2005, 06:29 AM   #4
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Re: Follow-up w/ rheumy

morning linda,
i understand. i have to drive 30 minutes to my doc in one direction. 30 minutes to the dentist in another town and 30 minutes to the physical therapy in yet another town. it's hard when i have to go to two in one day. i still drive myself. i am grateful to be able to. one day i too will have to gift over the driving to someone.
i will hope for a new doctor to decide to set up practice in your town. just so you can find her/him.
it's a lovely day. we woke up. that counts for alot!
peace,
bluelakelady

 
Old 06-07-2005, 08:47 AM   #5
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Re: Follow-up w/ rheumy

Linda I know what you mean by the rhuemy giving you meds and saying see you in 6mo. Plaquenil is the standard for lupus I think, and it takes a while to work. If you aren't feeling any better and still have severe joint pain call the doc and see if you can't get in sooner, I do. I also took methotrexate with the plaquenil and that helped a lot, unfortunatly I'm off both now and waiting for my rhuemy appt. next week. We will see what happens then and if I don't get better results, guess who will be dr. shopping for a new rhuemy. Our health is to important to leave it in the hands of someone who may not care as much as we do.

Hang in there
Glojer

 
Old 06-08-2005, 09:21 PM   #6
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Re: Follow-up w/ rheumy

Hi glojer, I think for the time being I'm just going to tke a break from looking for any further dx or a new dr, hubbies job is not going well at all and will probably be gone soon which means ins. problems so I 'd rather lay low and see what happens.
Right now I go in the 21st to have this SCS removed and that will be 3 surgeries in 4 months and I know this has really been screwing with my pain levels and my emotions and everything else.
After I heal from this them my PM is suppose to start working on trying to find a new cocktail to help with the pain before having to go for the pain pump.
I wish you the best of luck with your app, next week.
Linda

 
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