What's happened since my last post...

What's happened since my last post of 8/2010?  A lot!  In January of 2011 I was diagnosed with Common Variable Immune Disorder.  Now I get infusions of Intravenous Immunoglobulin or IVIG, which I will call it from now on, every month.  For few months I was getting it every 2 weeks.  So in January 2011 I quit my job at Health South.  I stayed unemployed almost a year.
In December of 2011 I started working for Preferred Home Care.  I loved it there!  I loved my Nurse Manager, I loved my co-workers, it was great!  It lasted until that summer.  My Nurse Manager quit.  We got a new Nurse Manager and I don't quite know how to describe her.  Her personality rubbed everyone like fingernails on a chalkboard.  She'd argue with everyone.  She'd make mistakes, then deny she'd done anything at all.  Her clinical skills were poor.  My Nurse Manager couldn't start IVs.  That was a real problem since we were a Home Infusion Company!  IVs were all we did!  She pulled a patients PICC line out!  A PICC line is a "permanent" IV line, put in under sterile conditions, that stays in for up to 6 months.  This patient was near the end of his IV therapy and could have had it removed for good.  Instead my Nurse Manager pulled it out and he had to have a new one put in to finish his IV therapy!  He was less than happy I can assure you!  We had patients complaining left and right.  Patients the company had had on for years were calling the office saying they wouldn't let her in their home again!  Yet, Corporate LOVED her!  No matter how much people and patients complained, nothing changed.
In the meantime, my immunity was getting better and I wasn't sick very often anymore.  I started having what my PCP called "sinking spells". After my second or third episode, he drew lab work.  My SED rate, which measures inflammation, was a little elevated.  So he sent me to a Rheumatologist.  THE rheumatologist for my area of the country, the HMFIC!  He'd been published, he is a professor at one of the Medical Schools around here.  The BEST guy to see!  Yeah...  Mr Rheumatologist x-rayed every part of my body, drew a gallon of blood out of my arm, put me on Mobic and sent me home.
I return in about a month, after he's gotten records from all my docs.  (The Neurologist I was seeing at the time thought I was "drug seeking."  Wanting narcotics because of the way they made me feel.)  He tells me everything is normal and I have Fibromyalgia.  He doesn't treat Fibromyalgia patients, my PCP would follow me.  I told him the Mobic did nothing and my back was hurting.  He looked at me and said "I'm really sorry about that." and walked out.
I go home, in terrible pain now, but tell myself "this is how its going to be from now on."  I go see my PCP and they put me on Cymbalta and muscle relaxers.  It helps a little, but not much!
As I am lying back in my recliner one day, in pain, my phone rings.  Its the RN from my insurance company.  I just absolutely fall apart and even start crying.  I'm not a crier.  I tell her what terrible pain I'm in and what's happened.  She says the magic words "Have you thought about going to see another rheumatologist?"  Now I'm an RN.  I should have thought of that!  So I call around trying to get an appointment within the year and a Rheumy that sees Fibro patients!  Finally I find one that will see me and in a few days!!!
I go see my new Rheumatologist.  I tell her everything that's been going on.  She actually listened to me!!!  Then she looks at me and says "I don't think you have Fibromyalgia.  Something else is going on."  At that time I had a redness on my face.  Not the "butterfly" rash of Lupus patients, but still she doesn't like it.  She does a million x-rays, a bone scan, and draws a gallon of blood out of my arm.  I tell her "I'm not real interested anymore in finding out what's wrong.  I just want some pain relief!"  She writes me a script for Pain meds!  I go home and sleep for the first time in several months!
I can no longer remember the date of my diagnosis.  I'll have to ask at my next appointment.  I just remember her saying I was positive for the HLA-B27 gene.  (Mr. HMFIC didn't even TEST me for the gene!)  Then she told me I had Ankylosing Spondylitis.  I'd heard of it briefly before, but didn't really know what it was.  I started looking it up on the internet and continue to do so, not liking any of the information I find!
I quit my job in November of 2012, I just can't take it anymore and the call was killing me!  Now I am trying to get on disability.  I've got an attorney and well that will have to wait for another day.  I'm tired....