Monday, July 3, 2017

I Do Have Lupus And RA After All…

16 days after my appointment took place, the new rheumatologist that I saw called me with my test results.  Keep in mind that these results were available on the patient portal, which I was given access to immediately after my appointment.  So in reality, these results were ready between one and five days after my appointment took place.  They were results that I had already seen. 

Results that showed the following:

-         Elevated ALT
-         Elevated AST
-         Elevated ESR
-         Elevated Hematocrit
-         Elevated Hemoglobin
-         Elevated Potassium
-         Elevated Protein
-         Elevated Sjogren SSA Antibody
-         Elevated Vitamin D
-         Decreased Lymphocytes

But that’s all totally normal, right?  She also ran tests for multiple myeloma.  She didn’t even tell me she was doing that.  Thank you, Dr. Google.  If that was really the case – if I had cancer that had gone untreated for nine years – I’d probably be dead.    

And what she didn’t test for was also telling. 

No ANA.  No Rheumatoid Factor.  Confirmatory diagnostic tests that should have been run, especially since in person, she didn’t believe that I have lupus and RA.   

Why it took her 16 – yes 16, not seven, not 10, not 12 – days to contact me, especially when I had left several messages for her, is beyond me. 

Of course, when I talked to her on the phone, she had changed her tune a bit.  She told me on the phone that my diseases are stable.  And I really wanted to say, “Oh!  You mean the diseases you told me that I may or may not have?”  But I didn’t.  Inside I seethed.  But over the phone, I tried to remain calm.  With everything she said, I replied with something like “okay” or “uh huh”, the way you respond to someone who you’re supposed to respect but don’t. 

The first time she called me – Day 16 – was on a workday at 10:15 a.m. on my cellphone, so I missed the call since I can’t have my cellphone out at work.  She had my work number and I had told her she could call it, but she didn’t.  It’s like, yes, I’m sick, but I work.  Sorry if that’s so hard to believe.  We finally talked on Day 17.  But I wasn’t counting or anything.  I’m immortal.  I’ve got nothing but time.

She also gave me numbers from the labs that were wrong – I had seen them all already and had pretty much memorized them.  And someone kept coming into her office while we were on the phone and interrupting her, so she kept telling me to “hold on.” 

Not only did she have no regard for me as a patient, but she also had no regard for me as a person. 

I knew that nothing she would say would come as a surprise.  And nothing she could say or do at this point could hurt more than our first encounter.  And nothing she could say or do could repair the damage that was done during that first encounter.

To the point where that first encounter will likely be the only encounter.  It was the first and likely the last.  I wish I could say it never was.  But it’s not that easy to shake off.  To be told after nine years that you don’t have the diseases you think  you have, and that you’ve been misdiagnosed and treated incorrectly, when the person telling you this has no evidence to base that determination around other than some mysterious beef with your old rheumatologist, it’s truly the stuff of nightmares.  It’s the kind of thing that I know happens to others, but I didn’t really think would ever happen to me.  But clearly I’m not immune.  And clearly after all these years of craziness, I can still be surprised…in a bad way...  

I entered that office with hope and I left with desperation.  Doctors have power, and this particular doctor used that power for evil rather than for good.  I’ll never really know why, but I’m 99% certain that she is not the doctor for me.    

I’ve already made an appointment with a different doctor at a different practice.  I made that appointment on Thursday and received the paperwork in the mail on Saturday.  The doctor’s office that I went to claimed to have sent me their paperwork twice and I never got it.  I’m noticing a difference already. 

I understand that everyone wants to be the hero in someone’s life.  But after nine years of living with lupus and RA, I am never going to be that person for this doctor, or any doctor.  I need management, not diagnosis.  I need compassion, not reaction.  I’m not a science experiment.  I’ve been there and I’ve done that. 

This is my life.  And lupus and RA are an excepted and recognized part of that life. 

I knew in my head and my heart that this doctor was wrong.  She made pronouncements without evidence or reason.  And when it came down to it, she wouldn’t even admit that she made a mistake.  All she could do is tell me what I already knew.  That my diseases are much more stable than they were nine years ago.  That they are in a different state, and yet they are same.

I have lupus and RA. 

July of 2017 is no different than April of 2008. 

Same story, different day, different month, different year. 

And I can breathe again. 

You can’t throw the baby out with the bathwater, not when the situation doesn’t call for that.    

This chronic illness thing is not a static journey but an active one.  No matter how much we hurt or how fatigued we are, we go on.  And we deal with so much crap along the way.  We let others inflict hurt upon us in the name of health.  We let doctors literally “play” doctor.  We find people we can trust, and sometimes we find people that we cannot.    

I knew I didn’t need Arthritis Foundation brochures about lupus and RA.  I could have written those brochures.  And if you think about it, I spent eight years in graduate school and I’ve been sick for nine years, so that’s 17 years worth of experience.  I think that might just trump medical school.  And if that doesn’t, well, it’s my body.  I think I am more of the expert in that than anyone. 

If anyone’s keeping score, I won this round.  But I’m back to the drawing board as far as rheumatologists are concerned.  I can only hope that the next appointment with the next new doctor goes better than the last one did. 

(I also had an issue with my insurance and needed a different prescription for one of my meds.  Neither she nor her office could seem to be bothered with that.  Somehow, my old rheumatologist took care of it.)

And in case you’re are wondering or missed it, I had an incredibly successful nine year relationship with my last rheumatologist – you can read about it in the post, “A Thank You Note To My Rheumatologist”.  Losing him is literally the only reason I would put myself through the hell of finding a new doctor.     

Bye, bye brochures!  Enjoy your time in the landfill.

“Nobody said it was easy,
No one ever said it would be this hard.”

-         “The Scientist,” Coldplay