A Surprising New Start

As I mentioned last week, I've known for a while that something was happening to me.  For a while I thought that maybe it was RA (Rheumatoid Arthritis).  I asked my doctor.  He told me that RA doesn't affect joints like shoulders or elbows.  I was angry that he wouldn't hear me out, and then he lied to me.   I vowed to only see his nurse practitioner after that.   I wrote about the next visit (from last week) here.  In short, I started telling the new nurse practitioner about my weirdest symptom- my foot that likes to go numb.  The foot isn't nearly as annoying as the shoulder.  My shoulder has gotten so bad that I often have to use my right arm to pull my left arm down.  I told her about the shooting pains that I have in my fingers and knees, bad enough to almost make me drive off of the road.  (I forgot to tell her about how lately my voice has started giving out sometimes.)  She listened.  I pointed out that I have 2 sick kids; I don't need drama.  I like to analyze.  I carefully weigh things before ruling in or out.  I'm not paranoid.  And I don't say things for the drama.  I guess that maybe doctor's aren't used to that?  Nurse practitioners are better listeners.

My point?  I got the phone call today that I have been waiting for.
Me:  Hello?
Dr's: Hello, this is ________ from Dr. M's office.  I'm calling about your blood test results.  How are you feeling?
Me:  Oh, getting better finally, thank you!
Dr's:  Are you still pretty tired?
Me: Yes, but I'm getting used to that.
Dr's:  Well, that would be because your Vitamin B is very low, and you're anemic.  The doctor would like you to come in for shots every month.
Me: (Relieved) I expected that.  I hope that it helps.
Dr's: That's not the only thing.
Me: (Heart stopping)
Dr's:  I have your inflammatory panel here.
Me:  Am I RF+? (Probably said too quickly)
Dr's:  I don't see that test here.  I see your ANA.  That is negative.
Me: Well, that's good!
Dr's: But your inflammation is high.  Very high.  Your SED rate and CRP are both high.  Your SED rate is 58.
Me:  ...........................

This is about where everything went fuzzy.  I don't remember the majority of the rest of the conversation.  My mind quickly went back to when Emily was put into Shands in October 2010, the time that she was diagnosed with Dermatomyositis & Mixed Connective Tissue Disease.  With the DM raging out of control, her SED rate was 39.  (I could have sworn it was 79.  I had told a few people that it was 79, but I just went and looked at her old labs and it was 39.)  So, my inflammation is higher than Emily's was when she was the absolute most sick of her life. Obviously, the good doctor was wrong to brush me off.  Clearly, something is wrong. And now that I have proven that, now HE wants to see me.  He had better be into treating me like I may know something because if he gives me that old attitude, I will be finding someone else.  Before I didn't care because I had his ARNP's to see.  Now I may have to only see him, if he runs his practice like our pedi does.  I may love his nurse practitioners, but if I have to see the main doc all the time now, we need to get along. 

So, after I had some time to absorb this, I wandered over to one of my favorite sites, Labtestsonline.org.  I looked the CRP back up, and the SED rate, too.  Just to make sure.  The SED rate normal range goes to 15.  And both are used mostly for degenerative autoimmune diseases.  Yes, they can be elevated for infections, too.  But I don't think (given my other symptoms) that just a little sinus infection could make it that high. 

So, what am I thankful for today?  I am again thankful for doctors that listen, (or at least their ARNP'S!) I am thankful that this has started the ball rolling on trying to figure out exactly what the heck is wrong with me.  I am (as always!) thankful for my kids who, aside from simply being completely amazing, will now help to be my support as I support them.  We went shopping with the Christmas money they got today.  I never had to raise my voice once.  I hate shopping, dread it, usually have panic attacks shopping, but today was actually kind of nice.  And I am thankful to the friend that sold me his laptop that is almost brand new.  I really, really needed a laptop.  I was willing to buy a new one, but I think that this one is better for me than any new one in my price range would have been.