Admit it...

 First thing Monday morning I had another appointment with the nurse practitioner at Dr.  M's office. I told her my condition continued to worsen over the weekend and they nor I had heard back from two separate neurologists. She recommended I go to the ER at one of our leading research/teaching hospitals to get my foot in the door quicker to see a neurologist. That was confirmation enough for me as this was also suggested by a sweet friend of mine last Friday, but we didn't want to go on the weekend thinking we might not see the specific doc who was being recommended.  So. We hopped in the car, dropped off David's sister at the airport (Deborah flew in to help us last thursday-monday!) and made our way to the ER. Although we arrived about 1pm and got checked in quickly and some prelim tests were completed, david, my sweet friend Michelle who volunteered to hang with us, and I hung out in the ER hallway until about 9pm....long day, but Michelle kept us company and gave us some much needed company and laughter!! AND it was her wedding anniversary!!! How romantic to be hanging with friends in the ER on your anniversary-ha!!!  

So, this is my second night here and struggling to sleep and finally got my phone to let me post. Yesterday was fairly uneventful. Had an echo done on my heart due to a cardiac enzyme that was elevated. All is well with my heart- nothing in which to be concerned. Met with the attending rheumatologist who spent over an hour with me. It took that long for me to debrief him all the details of my initial diagnoses, treatment if 22months, answer tons of questions, examine me, and begin to discuss a game plan. While I was in the ER Monday had an iv steroid- not the huge dosage I had in Bangkok but it began to bring my CPK down. He is continuing iv steroid which I'm getting every six hours. His goal is to get me back around 1000 CPK prior to discharge which will be quite a reduction from 8200 when I was admitted. We also discussed "options". One being a treatment called IVIG. To be quite honest, David have read a little about it, but have always dismissed because it's VERY expensive and not quarantined to work. Theirs rheumy thought it might be a good option for me sense I continue to flare and gave tried several standard and nonstandard treatments. So, we will discuss and research more-especially with insurance and side effects. The last topic of conversation was possible in-patient rehab after discharge here due to the severity of my disability now. I'm not even sure at this point I'm strong enough to fo rehab since I've got mini. Yes, that's correct. Mono on top of everything else. So that's giving me a triple whammy, too!
Lots to pray about and issues to work out. One of prayers for today is that the team here will consult with Dr. M's office plus I'll be seen by a neurologist today. 

My sister flies here in a few hours and so grateful for David and my sisters willingness to be here to help out!

To be continued....