Have you ever left your doctor’s office in complete confusion?  They say something to you and when you ask more questions or want them to elaborate you simply feel brushed off.  Sometimes when I leave my office visits I truly feel like I was just treated as if I was a rock!  Where is the compassion?  Do some doctors take a class in medical school called, “I am a narcissist, deal with it?”  News flash, I think you’re a major jerk!

I recently left my rheumatologist because I felt he was a know it all.  He had all the answers to none of my questions and then sent me off to see me in a year.  Who is that helping?  I always left there feeling so discouraged and wondering if I was truly losing my mind.  I would go for my visit and explain all my symptoms and he would say, “Bloodwork is great!  See you next year.”  What the actual F***

I had gotten so fed up with this cycle I left his practice and started to research treating myself holistically.  I was doing great!  Minor symptoms here and there, but the exhaustion!  OMG, I am so tired!  I wanted an answer.  It was time to find someone I feel comfortable with to grow with me.

I went to a new rheumatologist this week.  Here we go again.  She went over her checklist of shit and then we went over my entire past history from road to diagnosis to now.  She seemed to be listening and then said, “I think you have aged out of lupus.  I am going to do some bloodwork to confirm.”  I was dumbfounded!  Lupus has no cure, what the hell is this woman talking about!  I tried to ask some questions and was immediately shut down.  She said she will see me in 2 weeks to discuss the results.  UMMMM, OK, NOT!!!!  FUCKING NOT!!!!

Is this seriously happening to me?  I read about so many women that think they are losing their minds.  I am becoming one of these women.  I am exhausted!  Sometimes I truly wonder where I am going to get the energy to walk up my stairs.  Don’t get me wrong, I am floating on a cloud that my inflammatory markers are no longer in my bloodwork, but something is not right.  Oh, and BTW, I am pretty convinced those markers are gone because I eat a ketogenic diet, which I decided to do on my own. No props to any medical professional!

As I google I have found lupus can go into remission, become dormant, but not be cured.  Are these doctors nuts?  Something has to be done regarding knowledge of this disease, how to treat it, that it is not case specific and patient care.  Treating someone as if they do not know their own body is simply abusive.  Now I wait.

What do I do next week when she tells me there are no markers in blood?  Do I continue to argue that something is wrong and to test for something else?  Do I go to another doctor?  Do I muddle through life tired with no explanation?  How is this acceptable?

We need to do better!  The medical field needs to do better!  Autoimmune diseases suck!  23.5 million people are affected by an autoimmune disease in America.  I wonder how many of those people feel the way I do?  I wonder how many undiagnosed cases there are due to lack of research and education of health care providers?

I need answers.  I will continue to fight, advocate and raise awareness.  I cannot wait to hear next week what this new doctor says about my lupus and better yet when I challenge her diagnosis.  Stay tuned!