Mad and Venting

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Nikiangel
Regular Member


Date Joined Nov 2009
Total Posts : 29
   Posted 7/20/2010 7:03 PM (GMT -7)   
My doctor writes me today and informs me that my CRP is high (10) which shows inflammation in the body.  I ask him what my sed rate is because having had this disease for 35 years, thats what i always went by.  He says well its at 31 but 30 is normal.  So I write back.  Telling him first off, 30 may be normal for other people, but for me 15 IS NORMAL and anything OVER 15 is a flare.  I have had this "flare" for 2 1/2 years.  I stopped seeing my old doc because he told me well you finally have fibromyalgia (sp).  Told him he has been a great doc until now and walked out.  I was right, i dont have fibro (went to 3 docs for confirmation).  So the new doc starts me on remicade and says well we can up your dose and it takes time, dont stress.  Well, guess what?  Hear I am stressing and annoyed because I have had a flare for soooo long and no one is able to control it!  Then I think, maybe I shouldnt get mad at them they are trying.  Then they go ahead and say something stupid like "well you look good on paper" (meaning my bloodwork). HELLO!!!! 31 is not GOOD!!! 31 stinks!  Now having this for 35 years I realize I will have my ups and downs.  But I've been in a down so long, I'm sick of it now and would like to be "somewhat" better!  Is that just too much to ask for?  And then to tell me its Normal.  It's not, and I'm really mad!  Ok i've vented and feel better...I think.  To anyone reading this, your in my prayers, GB!
Juvenille Rheumatoid Arthritis - diagnosed at age 2 am now 37
Currently on - Remicade, Methotrexate, Prednisone
 
"God gave you this because He knows you can handle it, dont stop fighting!" - Grammy
"God brought you to it, He will see you through it"
 


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 7/21/2010 1:24 AM (GMT -7)   

sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 7/21/2010 6:21 PM (GMT -7)   
I'm sorry. No doctor should ever say "Well you look good on paper." That is stupid-we don't live on paper.

golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 7/21/2010 7:01 PM (GMT -7)   
I agree, I look good on paper too, but can have a major flare anyway. I think the most frustrating thing is waiting for these meds to kick in. This new med I'm on Orencia(abadacept) has taken 5 long months to start having an effect. I am oh so glad I'm feeling a bit better but the wait is horrendous, its left me an emotional wreck.

So I know how you're feeling, I hope the raised doses of remicade help you, did they give any idea how long you have to wait to feel improvement? I really hope its not too long.

Best wishes, golitho

wearyRAsufferer
Veteran Member


Date Joined Mar 2010
Total Posts : 2327
   Posted 7/22/2010 10:41 AM (GMT -7)   
At my last RD visit I am "good on paper" too! confused   I don't feel good. I am tired and I have everyday pain in a lot of joints but because it's only at about a 5 and not at rest- only during use- he is blowing it off. he says I am much better than the first time he saw me nearly 3 years ago. (Yeah- my husband had to practically carry me in and was feeding me. etc.- it shouldn't be too hard to be a lot better than that once you get on the right meds!)
He says he believes me but it doesn't feel like it. He says maybe my pain is residual. He starts calling my onset a "rheumatic episode". I am seronegative.
 
If I could get my meds without going to a doctor I would. I am tired of keeping track of how I feel so I can explain to him and then having him act like I'm healthy. I mean he's an RD- you expect "outsiders" not to understand the invisible disease but my God how many of us tell our RD's these things every day?  I feel like I must be crazy.
 
Sorry Niki- I sound like I am hijacking your thread.
 
I do hear you and share your frustration. I will keep you in my prayers too.

Nikiangel
Regular Member


Date Joined Nov 2009
Total Posts : 29
   Posted 7/22/2010 12:52 PM (GMT -7)   
 Thank you all for your replys.  Weary - no worries it's nice to see I'm not the only one with a dopey doc.  I just dont get it.  These doctors are supposed to understand when we say we dont feel good.  FORGET what a paper says....listen to the person!!!   ugh sometimes just so frustrating.  Yeah I could change docs...yet again, but I just started with him.  I think I need to lay down some "facts" with him, like i did my other docs.  You are all in my prayers. 
Juvenille Rheumatoid Arthritis - diagnosed at age 2 am now 37
Currently on - Remicade, Methotrexate, Prednisone
 
"God gave you this because He knows you can handle it, dont stop fighting!" - Grammy
"God brought you to it, He will see you through it"
 


TayIsa
Regular Member


Date Joined Sep 2008
Total Posts : 285
   Posted 7/24/2010 7:20 AM (GMT -7)   
I am sorry for your experiences....I am just a newby to the RA thing, and also think sometimes my rhuemy is blowing me off.  My family doctor seems to believe me though, as I NEVER go to a doctor unless I am dying, she got me an appointment with the rhuemy immediately where here you usually wait  6months or more to get in I was in right away.  Also when my pain med prescription runs out I can go to her for a refill instead of waiting to see my rhuemy.....  I think they see RA patients soooo much that they kinda judge your pain by others pain....I know its not right they should judge us all individually but I think they do do it.
I hope you get the help you need soon.
This is such a great place to vent as everyone HERE understands and doesnt have the attitude "well you dont look sick"
((gentle hugs)) and best of luck to get some relief
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