Update on my Mayo/Arizona trip:
So this has been already quite an interesting experience. The first day and my first appointment was with a hematologist. He was sadly like so many drs I’ve seen who have no desire to really find out why you’re sick. Where my disease is coming from. He threw out some new suggestions of chemos that wouldn’t actually cure me. Just suppress my immune system more. I sat there crying through the whole appointment. I was beyond disappointed by the lack of care this man showed. When we were explaining to him all my new symptoms he had the blankest stare and said, “I can sit here and act sympathetic, but I can’t do anything.” Ok there was no sympathy or care that man was portraying. Jeez it was terrible. It made me feel so hopeless and that the whole trip was pointless. Thankfully we scheduled more appointments and different drs after that.
The next day we saw a neurologist who was incredibly thorough and really tried to get down to the bottom of it. She already did a ton of blood tests and I’m going to be hospitalized Monday to do more testing to find out why I’m having so many seizures, so light headed and dizzy, and constant weird pain in my head. She said there’s a chance that from my brain infection in 2007 I have scarring on my brain and that’s what’s causing all this. If they could figure it out that would be amazing. They would have to do surgery on my brain to remove it, which is dangerous plus my lack of platelets would be even more dangerous so they would have to figure everything out with my platelets first. So thankful to see a Dr willing to help!
Tomorrow I’m seeing an immunologist which I’ve never seen one and am hoping they will be willing and eager to really find out why my immune system is so against me. Find out the real reason behind my disease.
Thankful that Rous and my mom have been able to be here during this. Sadly Rous leaves tomorrow and my heart is pretty broken. He’s done so good at trying to be there for me. Right after my first appointment when I couldn’t stop crying he said, “welp, one appointment down..couple weeks to go!” I thought about it and realized it made absolutely no sense at all and there was no comfort in that ha but I ended up on the floor in the hospital laughing so hard because of it. He really is doing his best. They both are. But it’s hard when you haven’t been in my place ha but they’re both doing so good to be there for me. I’ve had lots of people texting and asking and praying and I can’t tell you how much good that does for me to know people truly care.
Today we went to a butterfly stadium and there was thousands of butterflies…it was beyond incredible. I was in complete awe at the beauty of all of them. It was really on my heart how much the Lord truly loves me. He created all these beautiful butterflies but those aren’t His children. I am. He loves me and cares for me so much more than those unreal looking creatures. I am His. I’m in the palm of His hands. He’s in control of this all.
The lady on the plane next to me told me that the Lord put it on her heart to give me a book about Psalm 91. Which just so happens to be the chapter I’ve been reading and praying for months through all this. She said she’ll be praying for me.
“Because he has set his love upon Me, therefore I will deliver him; I will set him on high, because he has known My name. He shall call upon Me, and I will answer him; I will be with him in trouble; I will deliver him and honor him. With long life I will satisfy him, and show him My salvation”