Part 1

Hi everyone! I know it's been a while and I've been blogging less. But now I have some pretty big news to share.

Since 2010, I've had many ongoing symptoms. Though I got diagnosed with MG last year, there were still all these other symptoms that MG does not explain. I heard multiple times that it seems like there is something else but no one could figure it out. I also heard multiple times that all these other symptoms are "just anxiety". I knew that was not true, and by now I think we all know I'm a fighter... fighting for my life and fighting for what I believe in.

When I first came back here in January every bit of me was focused on getting the surgery, and all the other symptoms were tossed aside. I had to get plasmapheresis beforehand so my body would tolerate the surgery. Because of this, I researched plasmapheresis and central line placement. I found a video on you tube and it was of a girl who was getting plasmapheresis for something I had never heard of before... but as she described her symptoms and her life, I couldn't help but completely relate. I placed that in the back of my mind as I pushed on with getting the surgery set up. Keep that in the back of your mind as you read on.

The surgery got pushed back and pushed back. That little voice in my head was telling me "go to Rush University Hospital." But, there wasn't a robotic cardio-thoracic surgeon there, so I ignored that voice. Keep that in the back of your mind also as you read on. Finally guided by my own persistence rather than the will of God, I got my surgery done at a different hospital... and boy was that a mess as I've previously told.

After surgery, I needed to get to the bottom of if I do or do not have achalasia- a rare but serious GI motility problem that I was diagnosed then undiagnosed with while in San Antonio. Finding specialists in this are few and far between but it just so happened I was led to one... at Rush. Because I thought this could be a major concern with the possibility of needing surgery for it, I thought it would be smart to set up my MG neurologist there too. I certainly did not want to end up back in the hospital I was just at, who my current neurologist works through. Well if there are two doctors under one roof, I might as well get them all set up there.

We know the surgery resulted in complication of pulmonary embolism. With the pulmonary embolism added more weird heart symptoms. I already had irregular beats, palpitations and fast heart rate, but now it was worse. When I got bad chest pain, it led to an EKG. It was abnormal so I had to go through some further heart tests, also abnormal. My cardiologist and I talked about me seeing a specific specialist, one of the best in his specialty, who recently came here from out of state and is now at... Rush. I called to set up an appointment with him and it just so happened he had a cancellation for an opening right away. That was about 2 weeks ago. God was placing the pieces together.

July 22, 2013... the day the last piece of the puzzle was placed in. It was almost an epiphany that my entire reason, entire need to come back to Chicago- was this doctor right here. This doctor at this hospital God was telling me to go to for 6 months now and I finally listened. (See how we end up so much worse off going against the will of God?!) That day, a part of me that's been missing ever since getting sick in 2010, she came back too! Honestly, this may have been the happiest day of my life.

I didn't get a definite diagnosis that day but I knew I was now, finally, in good hands. Well, he talked about what he expected was going on and as he described the symptoms I was amazed I fit every single bit of it. At the end of him talking, I said "you just perfectly described me." He wasn't shocked... he wasn't shocked because he knew- he finally KNEW- what was going on with me!! But before the diagnosis he would need to do some testing. I just had that done yesterday, and yesterday- I received a new diagnosis- a diagnosis that explains every single one of my symptoms that is not MG- a diagnosis that replaces every other misdiagnosis. That diagnosis is that same one that girl in the plasmapheresis video had. God really was trying to tell me something all along, trying to lead me to the doctor, to the answer.

But to find out what that diagnosis is, what it means and where I go from here, you will have to come back for part 2. For some reason it's been hard for me to get to the point of sharing this with anyone. I've known for 2 weeks, but I couldn't bring myself to say anything. I'm not quite sure why. It is a huge relief and something I would like to share. So I'm sharing it slowly and soon you will know what I know... but for now I'm tired and signing off :)

And yes, I still have MG. But now I also have my missing puzzle piece to make me feel whole again. Thank you JESUS!!