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mnjodette
10-01-2008, 07:36 PM
Well, I saw my new rheumy today (or at least the one I'll be seeing until my other rheumy comes back next fall.) Interestingly, this is the rheumatologist I was originally scheduled to see when I first 'got sick.' But, then I got sicker and had to get in to someone who could see me sooner. Funny how things work out.

Anyway, I was so nervous about seeing this new doctor. I was used to my old doctor - we had a good relationship; she understood. I've read so many horror stories here about 'stinky-face', arrogant or unresponsive doctors. Hubby came with me and we were so pleased with the appointment. BIG sigh of relief! Well, at least about the doctor anyway.

Ya know, there's still a part of me (after all this time) that still thinks someone is going to say: "Oh, big mistake. We're sorry...you don't really have lupus or any other autoimmune disease. Let's get you off all that medication." Stupid...I know. Just sailing on the 'ol river denial.'

But, of course, that's not what she said. Duh. So, back up to 10mg prednisone to help manage the pain. The cellcept isn't going anywhere, as I've had heart/lung stuff, and have borderline high creatinine levels so she worries about me developing kidney stuff. And, plaquenil will probably always be my friend so I don't fall asleep standing up! She also suspects limited scleroderma (I have that antibody and some signs of it in my fingers.) Said my Raynaud's may require medication, at least in the winter, because of the possible scleroderma. Also said I really need to find a way to sleep regularly (ya think?) but knows how hard it is. I've tried so many things for sleep, but Ambien seems to work (at least mostly) so she said just keep taking it for now. Sleep is more important than worrying about dependence on the med. She confirmed I have fibromyalgia as well, and found lots of those fun tender points. She actually spent 45 minutes just going over all the notes and questions I had written out for her.

She suggested I do some research on Lyrica and Cymbalta and decide if I want to try one of them for the fibro. She also prescribed an arthrotec cream for my hands, feet, elbows....small joints. My tummy is a bit sensitive and taking NSAIDs for the pain just has to stop. Also encouraged me to do warm therapy pool at a local therapy clinic, and go through their "Power of the Mind" program to learn how to better manage pain, stress, anxiety.

Very fruitful appointment. My hubby is a freak for detail and facts and she gave us lots of both. Now, I just have to sort through all the details and figure out where I want to go from here.

So, off to sit in the hot tub and soak away some aches and pains, and relax enough to sleep. And, maybe cry a little - hubby won't notice cause it'll be dark.....

Hugs to you all. G'night.

Jody

Razzleberry
10-02-2008, 05:14 PM
Ah Jody, don't cry. It'll all be ok.

I relate to your feeling that some apointment somewhere the doc will say it's all a mistake and go home you're fine. We've all been there. I think it's part denial in our own minds and part the feeling that deep down we (well me anyway) might just be making a mountain out of a mole hill.

That's great that the new doc is thoroughal (can't for the life of me spell that tonight) and interested and didn't rush you. Boy, having the time to talk about eveything is half the battle I think. Hang in there. Know that you're in evryone's thoughts and we think you're awesome :-) lupus and all!

Oluwa
10-03-2008, 02:11 PM
Oh, Jody...I hope you are feeling better today and didn't cry or didn't in the dark alone. That would be awful...head hugs...or maybe a good cry will help you to sleep like a baby?

Did you sip a bit of Merlot while in the hot tub...under the stars?

Well, I happy to know your appointment was a harvest of good things for your bad things and for your fears...I hope this doctor out shines your last and her attention and care continues. I am so happy your fears of a new RheumBA never came to be.

I take a walk down the path of denial every so often...or waiting for it to disappear. Poof, gone..it ran it course. Fooled ya. It feels good to daydream, deny it for a while, eh? I don't think it ever goes away...puttering into our thoughts now and then...

I tried to live the denial at the beginning of the year..it didn't work...remember when we all tried...

I toy with the thought of stopping all medicines, then I think , reality... what if I get worse. Scared straight.

It's not stupid to think those thoughts...sometimes I wonder if that is what keeps us motive to find better, to feel better...

5mg, 10mg...I know how we dislike the thoughts of what it may change with us in the long run. But girl, if it will take the pain away, make your current days brighter I would do it. Matter of fact I want to but my doctor, today again said no. He feels my lack of sleep is causing most of my pain, headaches, slow to heal and fatigued..he prescribed Lunesta.

I am sorry about the scleroderma and the FMS. Did she mention prescribing a FMS regime....Lyrica, Flexeril, Elavil? I was dosing with those, but as a whole they made me feel worse mentally. Depressed. So, I stopped.

Cymbalta works wonders for some, that maybe your pill...smile. Me, I was on that too..made my pupils huge, glazed then after that stupor I was flying high, energized, happy then when I upped the dose on schedule I felt like an amoeba. It was taking a spell for my body to adjust to the new dose. A bit too long, I couldn't wait so....ugh I stopped it too. I am just so sensitive to those type of products. I felt too weird for about 30 days...I felt altered. No giggles, no humor.

Cymbalta....It is one of the few that doesn't cause weight gain.

I know sleep and exercise play a very important role with fibromyalgia symptoms..I hope you get some good ZZZZZ's.

Being tired, without sleep wreaks havoc on our spirit, our emotions...it hurts mentally just not physically.

We will find our recipe to feeling good...sounds like you are in good hands.

Enjoy your evening, Jody..hugs...
Love,
Oluwa

mnjodette
10-03-2008, 03:36 PM
Thank you Razzleberry for understanding. I sometimes DO think I'm just being a whiner...making a mountain out of a molehill. Then some doctor comes along and tells me I'm really sick and then I just WISH it was a 'molehill.' :oops:

Oluwa, I actually didn't cry - I also didn't sleep so hot, but I didn't cry. Yesterday; today - doing my research, thinking about how to move ahead. Appreciating the beautiful day (home today...no work) and grateful I can take a few short walks and breath in the crisp air; stand outside and do some stretching (we live in the 'boonies'...no neighbors to think I'm whacko :lol:.) Prednisone is working it's magic on the inflammation, so that's a relief - joint pain is better. Tonight...a movie, a sit in the hot tub (this time with a glass of merlot!!) and hopefull I'll sleep tight. Thank you for always taking the time to encourage and send cyber-hugs. Hugs right back to you!

Jody

rob
10-03-2008, 03:41 PM
Hi Jody,

I'm happy to hear you saw a good rheumo. Seems like there are so few good ones out there. I thought I was the only person who has dreams of this whole thing being a mistake. Of course, reality always takes over, and it's back to the norm.

To hear about a really good rheumo gives me hope that my new rheumo will be OK. Have a good night.

Rob

Razzleberry
10-03-2008, 05:51 PM
Hey Jody,

I posted on another post (got my threads mixed up ~sigh~) about Lunesta then realized this was the right one for that. Anyway you said you were thinking of giving Ambian a try for sleep. I haven't ever had that but I use Lunesta whenever I'm really frantic for sleep and on the verge of a flare or when I know the next day will be long (like traveling) and I have to function and I must say it's a wonder drug!

You go to sleep quickly and the next thing you know it's morning about 7 hours later and when you get up there's no grogginess. You just feel human again :-) Just thought I'd let you know how well it works for me.

Hope you're out of the blues and feeling better today. Hang in there!

Pretti in Pink
10-04-2008, 03:41 PM
mnjodette,

Bitter/Sweet huh- glad you have an enjoyable visit but sorry to hear that you got some undesirable news. You know we are resilient and we will find a way to cope, even if it is with the help of a few meds. Relief is the key, hang in there. BTW, you know a girl can always use a good cry every now and then.