Re: Was fired by my rheum or did I fire him?

April 10, 2008

I'm sorry you are having such a hard time. My rheumy actually told me

when she diagnosed the fibromyalgia that she doesn't treat fibro, that

I would have to go back to my pcp. And when I went to the pcp, she

said " what did the rheumy recommend? " I think it's that " I don't know

what do to help you so I don't want to deal with you " attitude.

Doctors just can't handle not being able to fix you....

I hope you find someone that can help out soon.

Mira

April 10, 2008

Darlene,

sorry about the morons in your life that just don't get it, or don't want to. In

my household, they try to " outdo " me. God, it's pathetic.

/Mi

Was fired by my rheum or did I fire him?

I haven't updated because, well, I feel like crap. And my husband

says he is getting " cold " to the fact that I " hurt " all the time or

feel " sick " all the time.

Last week, after realizing I had been off steroids for enough weeks

that I shouldn't be swelling at all, I ran over my list of meds to

see what I had added recently that could be causing the blurred

vision, excessive swelling, etc. The only new thing was Lyrica and I

was up to 150 mg 2x/day. So I called my rheum's office (one visit

only, the day he diagnosed me in January), spoke w/the nurse and

explained I felt that I had side effects to Lyrica that were not

beneficial to me. She stated she would talk to the dr and then get

back to me.

On Monday, when I still hadn't heard anything, I called back and she

said she would try again to reach him.

On Tuesday, the message I got was " then I can't do anything else for

you " ! I asked the nurse what the @#$!# that meant? She said that he

wasn't going to treat me any more. I asked did it mean I was free to

find another rheum? She said " I guess so " .

So I called my PCP who referred me to the jacka$$ to begin with and

they gave me 2 other names. I called one and was told they would have

to " talk to the doctor and get back to me regarding taking me on as a

new patient " . I'm still waiting. I called the 2nd one this morning

and while they cannot get me in this month, they will put me on

the " cancellation " list and set up an appt for me for May.

In the meantime, having told all this to my pulmonologist, who treats

my COPD, asthma, allergies and OSA, they went ahead and prescribed me

one month's worth of neurotonin. I started it last night. I still

also have my darvocet and robaxin. I cannot take ultram because it

can cause folks who are allergic to codeine (me!!!) to suffer a fatal

reaction. That wasn't a risk me or the pulmo were willing to take.

I have also started taking probiotics and some natural

supplements/vitamins from univera (aloe gold and ageless xtra). They

(the liquid ones) taste terrible *but* if they have half the results

claimed, I will feel like a new woman.

My mother has been giving me a hard time too about the fibro. I have

been told " you spend too much time online " . Hmmm, let's see. I'm out

on medical disability and waiting for my hearing, because of my blood

clot my DH doesn't want me zipping off here and there and because of

my excessive swelling, I can't exactly exercise. Anyhow, I decided I

wasn't going to say anything to them any more. While it hurts my

feelings that my DH, who has seen me writhe in pain and who has had

to help me get up from a crouch because I " froze " , is now acting like

I should be " over it " , well, he'll get the gist of it eventually that

I WON'T get over it! Yes, I can eat right, take supplements and

vitamins and work on losing weight and building up some exercise, but

it isn't going to change the fact that I have COPD/asthma/allergies,

or fibro, or hypertension, or am at risk for another DVT. All of

these can be reduced and managed, but I'm not there " yet " .

Sorry to vent. I hurt all over today. I go to the chiro tomorrow and

hopefully, all the " out " places can be put back in!

Darlene

April 10, 2008

Hi Darlene,

I've missed you and when I found this post wanted to say hi and tell you how

sorry I am that you feel like crap. I'm sorry you have such crappy people in

your life right now.

That rheumy sounds terrible. I don't know why there are so many bad doctors

out there. The ones who just don't care about anyone much. Fit into their mold

or forget it. I am shocked, but I shouldn't be, that he wouldn't treat you

because you think you are having side effects from a medication. I've run into

a few like that. My previous pulmonologist was a really terrible guy. He

yelled at me even. I like my new pulmonologist for treating my Sarcoidosis and

asthma and allergies, but he " doesn't believe in Fibromyalgia. " He believes all

my symptoms are from Sarcoidosis, but can't exactly explain it to me. It just

is. Thank goodness my PCP, who is really nice, does. I'm planning to go to a

Rhuem soon that my eye specialist recommended - for Sarcoidosis - he doesn't

believe in fibro either. I'm hoping the Rheum does.

Another doctor story. I called my psychiatrist and left a message for him to

call me about a medication I'm taking. He assumed I was calling about samples

and so didn't return my call before I went to Boston to stay with my son for the

week. I was calling about a dosage question and since I couldn't get in touch

with him, just adjusted the dosage myself. He called while I was gone and left

me a message that he had samples come in that I could get at my next

appointment. That's good, but I needed him to answer an important question - I

thought. He's also the doctor that when I told him I would probably be on

Medicaid next year told me that he wouldn't be seeing me then. No sympathetic

reply that he was sorry that he wouldn't be able to or that he would consider

taking me on a lower scale (I've been seeing this man for years, I have problems

with depression and anxiety from PTSD), just - won't be seeing you after that.

He used to be an understanding person, but has

changed recently.

I'm also sorry that you are having trouble getting understanding from your

husband and your mother. My mother is the world's worst and is only interested

in herself, so she doesn't even acknowledge it. We don't speak much - she is

toxic. My son believes everything I go through, mainly because I say it is so.

He actually believes anything I say, mainly because I don't lie to him or anyone

else. That's what so strange about the other people in my life. Do they

actually think I would make this up and not lie about anything else or do they

just consider me a lier in general? How strange.

I hope all the out places got put back in! (I take the liquid vitamins too.

My doctor says they are absorbed better and are better on my digestive tract and

mine taste terrible too.)

Wish I could help you feel better. I believe you and care about you.

Much love,

Marti

ddean228 navydaisy228@...> wrote: