I started this blog, somewhat in a hurry, so now I am going to back track a bit, to catch everyone up.

I have been in pain for over 10 yrs.  Mostly in my hips, but I also have that "all over" pain that was diagnosed as Fibromyalgia.  The kind of pain that there is nothing they can do about, except pat you on the head, and send you on your way, or to another Doctor to collect more money.  Bitter...yes, I am.  I have been to numerous Rheumatologist, and because I don't fit the mold; meaning young male, positive blood work, I don't get a diagnosis.  Again, patted on the head, or sent to another money hungry Doctor.

After awhile, you become very jaded, frustrated, or lets just put it on the table, down right pissed off.  My last Rhuemy said, because I didn't have a "bamboo spine" I didn't have Ankylosing  Spondylitis, and even if I did, because I have a heart condition, he wouldn't treat me anyway, so we won't bother with the blood work, nor Narcotics, or NSAIDS because I have stage III kidney disease.  Yeah, he was a trooper for all women that walked through his doors.  He was fired!  I think there was a party, but I couldn't prove it.

Fast forward to now.  My wonderful eye Doctor, Dr. George diagnosed me with Iritis, and wrote a letter to my primary stating that he felt this was another piece of the puzzle of AS  ... I can't keep spelling that horrible word out, so can we agree to call it AS??   SO, I called my primary's office and got her Nurse Practitioner's instead.  (note to self, in writing...Never make this mistake again)  She advised me that ONE, just one case of Iritis was not going to get me a visit to the new Rheumatologist.  

A few weeks later, I woke up in so much pain, I felt like a Semi ran over me, not the usual Mac Truck, but the biggest semi that was working.  Nothing worked for the pain; vicodin, aleeve, tylenol..nor mixing them.  Standing in one place was beyond any pain I had had in years.  Forget that pain scale that we all hate to relate our pain to..I was at a 20. 

Day 3 with this pain, I agreed to let Charles take me to the emergency room.  I couldn't rest on my back, I had to stay on my side, in the fetal position, and cry.  I did get a fantastic nurse and Doctor.  They ran all the usual tests, telling me they just knew I had Lupus.  My face was so red, it was purple.  Ahhhh, here came the Morphine...4 mg.  It was taking that stab me with a knife, twist it and stab me again Pain away, but not that throbbing, aching, pain, so I couldn't complain...until the knife pain started coming back after about 15 mins.  The nurse came in, and I was crying and she went to the Doctor to see what the tests results were, and to ask for more pain relief. 

The Doctor came in, confused because all the results were negative.  He could see how swollen my hands and legs/feet were, yet every test for inflammation were negative.  My face was purple, a rash across my nose and cheeks, all the Lupus tests - - negative.  They always are!  He gave me more morphine to get me home, and stronger Vicodin, and had me make an appointment with the new Rheumatologist ASAP. 

After we got home, we found all the paperwork we could find showing the fused SI joints to take to this Doctor, hoping to cut to the chase of getting diagnosed and praying for some type of treatment.  We typed a letter w/ the labs and x-rays, sending them before my appointment, again praying that he would see something the others hadn't seen.  We had a week to wait.

He was a nice man.  First saying he couldn't diagnosed me with AS, then saying yes it was.  Then sending me for new x-rays, including hands, feet and lower abdomen.  After a few weeks of this, we heard what we had been waiting for for over 10 years.  " You have a strong heart muscle, and you are fusing, for whatever reason, AS or not, so I am going to treat you with HUMIRA"   I could have hugged him!!!!

Next, to get the insurance to agree to it.