Day One ~ Doctors, Doctors, Doctors

I woke today inspired by friends and ready to go get the Good God had in store for me. I was still struggling to breathe, but feeling a bit better overall. Walking in through the National Jewish double doors I was greeted by the familiar scent of those sweet Rose Petal toys from my past. :)  It was a welcome comfort.

My day started with vitals and a spirometry which of course made me feel like a failure. I had to remind myself that I was here for help though. One day I will pass these stupid lung function tests! The nurse led Mom and me back to the room where we were quickly met by dear Dr. Katial, the immunologist. I absolutely love that doctor! We discussed recent events and shared his dismay with my current condition. He was "underwhelmed" by my status on such a dangerously high dose of steroids and other meds. He added orders for tons of labs and said he would be talking with Dr. Olson and the other doctors as the results came in. Even though it was the first appointment and he couldn't do much more than say he needed to gather more information, I actually left feeling extremely hopeful. I could sense his urge to fight for me and that was something I've been longing for.

Without a wasted minute, they hustled us across the waiting room to the other exam rooms to meet with gastrointerologist, Dr. Toribara. The meeting was light-hearted and concise. He has quite the sense of humor. He was quick to point out that I am a "Hell of a case" and he's glad he's a minor player in it! He confirmed my beliefs that reflux/gastric problems do not play a role in worsening my asthma or health problems. Even though there are studies to show the correlation is possible, he said it just isn't the case with me. With that, piece of the puzzle in place, we rolled on over to appointment number three with rheumatologist, Dr. Maleki.

This is where things got a little heavier. She reviewed tests, discussed symptoms, and absolutely confirmed Churg Strauss as my diagnosis. She said it's such a rare disease that she has never seen or even read about such a solid, early stage case. Then she talked about the treatment. She was concerned about my course of treatment since the initial diagnosis on August 30th. Things haven't exactly gone as planned and she wasn't pleased or content with it. As I listened to her talk I thought back on the past few months. It's like they were flashing before me. I was seeing all the things I try to put out of my mind in order to cope from day to day. Things like begging doctors to order tests, communicating back and forth across the country, missing work, inadequate care, contradicting plans and so on. She explained the possibility of trying other treatments if the one I'm on now doesn't start working. Her scenarios included options that aren't readily available and some that need to be monitored very closely and seriously. In my mind I knew that nothing she was discussing was likely if things continue as they have been. It's time for a change. I need these doctors for more than a week. I need help. I want to work and I want to live. I deserve to live. She wrapped up the appointment by examining me and pointing out ways my body has deteriorated over recent months. She also order several more tests and promised to consult with Drs. Katial and Olson to develop and wonderful plan. I walked away quietly knowing that was exactly what I needed..."a wonderful plan".

After that, I was about 30 minutes late for my appointment with ENT, Dr. Ramakrishnan. It was no problem though, they were able to get me right in. He reviewed his surgery notes from October and examined my sinuses. Overall, the good news is that the surgery was a success, but there is still a problem with eosinophilia. He said it was most likely connected to the Churg Strauss and his role from this point forward would be a minor one.

That wrapped up the first day with the exception of a few more needle sticks. :(  For a day of initial meetings and tests I already feel like big things are going to happen this week.

a little different this time

Everything about this trip has been a little different from the beginning, so I feel inclined to take a different approach to blogging about it too. Rather than the simple day by day ~ play by play rundown I've usually given, I feel the overwhelming urge to be honest with myself and include my raw, uncensored thoughts. I do believe God used my dearest friends to get me out here this time for a reason. He has a plan for me. I can't claim to know that plan, but I want to be able to look back on these trying times and remember how it feels so I can ALWAYS be thankful. I know that life can change drastically from one day or even one hour to the next. The outcomes I am staring at this week could be radically different next week, but that's okay. The important thing is that I'm on board again! I'm back in the game and I am ready to fight. I'm ready to do what I need to do, whether it's a little different or a whole lot different....