Thursday, March 24, 2011

Turned away by new Rheumatologist. My day could be better.

Sorry for the radio silence.  Here's where I am right now.

I moved a while back and I've been scrambling since to get my medical stuff in order.  Got a new primary care doc, Dr. T, who I like.  Got my meds transferred over to my new insurance. 

I still haven't heard any news from the state of NH about my medicaid.  So thank the gods for M's insurance or else I'd still be waiting for insurance from the state that I lost because of a false information snafu.  My meds would have run out last month and I'd be a painful mess. 

Here's my new problem.  I've been meaning to get a new Rheumy since I moved but I put it off because all the medical running around tires me out.  My old Rheumy, Dr. K, recommended someone local to me but I hadn't called. 

My autoimmune disease is having a flare up.  I had red lumps on my right index and pinky finger joints at first.  Those seem to be gone but now those two fingers are so swollen they don't bend anymore.  Right index finger is easily double the size of my left one.  My pain and stiffness is up in the rest of my hands as well.  So I called.  Turns out this Dr. P won't make an appointment with someone until their medical records are sent over for her to review.  I didn't like that right away.  It felt like I was auditioning to have a doctor.  I called the other Rheumy close by and he does the same thing. 

So fine.   I had my records sent over to Dr. P and today I got a call.  She has looked over my records won't be taking on my care.  She strongly recommends that I stay with Dr. K. 

What?  First off.  What the hell?  Secondly, stay with Dr. K? Who is over 2 hours away?  And books 5-6 months out?  For this flare up I'm having now?  I can't work, I can't drive.  Travel is expensive.  My benefits cover my half of the bills with about 30 bucks left over.  Travel is also extremely painful.   Taking the bus the 1 hour ride to Tufts before would knock me out for almost a week after the fact.  My joints just can't take it.  So now we double that?  Sure, this sounds like great advice, doc!  I was having an okay day, but now I'm a weepy mess.  Fantastic.

Is my disease that weird that you just don't want to deal with it?  I know UCTD is complicated.  It's not set in stone.  It changes, it varies.  Sort of like EDS.  Manifests differently for each of us.  But seriously.  What.  the.  fuck.   Pardon me, but grow a set, doc.  You don't even have to figure out what it is.  I told you what it is.  Just help me if it gets worse. 

I may have confusing conditions, but I'm a good patient.  Friendly, smiley and generally compliant.    Plus, I'm cute and small and fit easily into most overhead compartments. 

To me, I seem like a patient jackpot.  I'm a privately insured nice person with a chronic disease that will require lots of tests that need to be periodically repeated and will need to be seen more often than most.  I thought doctors liked money. 

I'm sure there is a reason for Dr P to reject me like this.  I know that probably she thinks that I'll get better care for my crazy-ass disease at a top notch place like Tufts.  But right now that doesn't help me.   I'm in pain and not getting help, so it's hard for me to give a damn about the logical reasons of why she made this decision.

Anyway.  I'm upset.  And I'm tired.  And my hands don't work.   Dr. T's office called once they had heard what happened and at least they were understanding that Boston is a haul for me and sort of out of the question.  They're trying to set something up for me with someone else in the area.   Have to wait for a phone call.  So I hope.  It's a thing I have to remind myself to do.  I pray and I hope.