More doctors to see - June 2009

I have my period.  Joy.  The third day, as before, is torture.  I am irritable, tired, and have a bad tension headache.  Although for once my muscles are not inflamed.  I have to take Fioricet for the headaches.  I go see another rheumatologist, Dr. A. (the sixth doc I’ve seen).  He looks like Billy Bob Thornton.  I want another opinion after seeing Dr. B here in Philly.  Dr. A. does a new patient interview with me and a physical exam.  I tell him how tired I’ve been, depressed, etc.  He is concerned with my suicidal thoughts and lack of sleep. He doesn’t think I have lupus, but that I have fibro and need to see a therapist(!), need Zoloft and a sleep study.   I feel that I have been heard, but when I mention the possibility of a hormonal imbalance I am dismissed.  Literally.  He wraps up the session and leaves.  I suddenly feel like it’s 1950 and I am the “little lady” with her “female issues.”  Despite my resistance I finally succumb to the Zoloft and take it for the first time.  I cry when I swallow it b/c I feel like my mind is already grasping at sanity and this feels like I have been defeated by whatever illness is taking over in my brain.  It makes my hands shake and heart race. 

I make an appt. with endocrinologist/gynecologist, Dr. K. (the seventh doc I have seen thus far).  She is fantastic.  She spends more than an hour with me and my sister Tammy, who is with me.  She has insightful questions and really listens to me.   She gives me the first encouraging words I have heard and tells me this is the worst it’s going to get.  She tells me I am going to have to accept that whatever is wrong with me I will need to take care of myself and give it at least a year to recover.  She decides to run tests for cortisol, glucose/insulin, hormones and an internal to check the cyst I had.  I have some hope for the first time in a long time.

I meet with a therapist, Dr. M.  (doctor #8) I have found her through my insurance.  She seems nice enough, and when she asks me why I am there I explain that I’ve been sick and am going through a serious transition.  That my being sick is forcing me to see my life in a different way and that I may not necessarily be able to pursue my acting career in the way I wanted.  Also, that I am 40 and had to move home with my parents while I get better.  I see her only one more time, b/c the 2^nd time we meet she tells me I “look fine.” 

I see Dr. B again (the first Philly rheumy) and his receptionist is cranky to me again.  I try to be sympathetic that she is busy, but c’mon lady.  Dr. B. has just flown in the night before from a conference overseas.  He seems flustered, doesn’t remember me, and hasn’t looked at my test results.  When I ask him about them, he says, “oh yes, let me go find them.”  Everything that was done for him, including the MRI, is normal.  My ANA is still elevated, but less so than it was in April.  He says I have UCTD, undifferentiated connective tissue disease.  Whatever the f that is. He says, “is it life-threatening?  No.  Will it be an inconvenience? Yes.”  I do not find this helpful.  He insists I have lupus and that I have a butterfly rash on my face (I don’t) and that I am probably photosensitive (even though I am sitting in front of him with a tan).  He tells me to stay on all of the medicine I am on. My Mom tells him I have always had a reddish face, and that there is no butterfly rash, but he is not hearing her.   We decide as we are leaving that we will never go back to him again. 

I do a sleep study at the hospital.  They tell me I am not sleeping.   Very helpful.