Monday, February 13, 2017

Step Two: "Pain Advocacy"

In my completely unqualified opinion, the second step in understanding your pain is always, ALWAYS advocate for yourself-- NO MATTER WHAT.

Flash forward 2-3 years later, I was assigned a new doctor after mine had retired.   Now, let’s not blame my previous doctor.  He had LITERALLY known me my whole life, and knew me very well.  He had known about the many challenges I faced growing up..which could explain his “depression” diagnosis.  Also, the pain in my body didn’t really make clear sense, ergo the FIBROMYALGIA diagnosis. 

They assigned me her and little did I know my whole world would change.  She went through  my file with and noticed something odd: 21 yr old, in pain, with headaches/migraines, diagnosed with fibromyalgia--with NO test to validate this.

So she asked me if I would be okay being sent for bloodwork. Now we are getting somewhere.  Why did it take 10 years of complaining of pain to get blood work you might ask..who knows I am not a doctor.

Then came the blood work.  I got the results “medical jargon, medical jargon, abnormal ANA levels, more medical jargon, go see a specialist!” I have no idea what that means, but okay! 8 months later, I finally get in to see my specialist.  She barely speaks English, knows almost no “laymen’s" terms, and has HORRIBLE bedside manner. Can you feel my excitement?!   So after our initial “consultation,” our conversations sounded like this,
“How are you doing?”
“Not great, I have good days and bad days”
“EXCELLENT, good days are perfect. See you in 6 months”
Uh…WHAT?! You are a specialist. You make probably my salary in a day. That’s your idea of perfect? What should I do? Oh, got to physio and a massage therapist..perfect! I already do that. And….take T3’s and anti-inflammatory’s..even better.  These have proven to be helpful in the past!!
Now repeat this conversation every 6 months, with blood work and we finally have a diagnosis after a year and half.

As Dr. House once said "Its LUPUS.."
So that is step two...continue asking no questions always trust Dr. House, I mean your specialist.

Got your own pain advocacy story? I would love to hear it, leave me a comment so I can share in your misery? Confusion? or whatever you want to call it. 

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