First, some pictures!
Take 1-Robbin Dutton and I at the clinic in Nevada. Haha thanks Gene for holding my blood in the picture...
Take 2- much better!
You probably don't want to see this but I'm showing you anyway! You can see chunks of blood going in...
There has been SO much going on. On Saturday, I was looking at my blood work for the week and I noticed that my platelets are low. That is why I am bruising so easily. Sunday we went to church and hung out at the hotel. Monday I did another major auto-hem. Everyday before I do anything, I have to do homecare. That is the treatment where you make your own medicine with your blood. That is so time consuming. It takes around 45 minutes to an hour. So yesterday I got to the clinic, did my homecare, then did the major auto-hem. It went well! That one also takes so long. After the auto-hem they had to test me on some nutritional supplements. My body is not absorbing nutrients like it should be. He wants me to start having this medical food shake everyday. They are so encouraging by saying "oh this smells so good! Good choice in flavor"! Have they ever actually tasted this stuff? It's nasty. Anything with the word "medical" or "healthy" is gross. I got so inpatient by the end of the day yesterday.
The clinic here doesn't know what the word time means. It drives me crazy because I hate being late. If you know me, you know that I love to be early and on schedule. Well here there is no concept on time. Patience is one of the fruits of the Spirit. We all want to be patient. Never ask God for patience if you aren't ready to be tested. Right now I am NOT patient. It's making me crazy!!! So many things come up that take more time and there is no schedule because it's the medical world. If you have never lived in the medical world, count yourself lucky! But, living in the medical world does mean that you learn to actually focus on the moment like Christ says to do. When you're sick, you have to focus on what is going on right then. You can't plan ahead. And by ahead I mean 1 hour ahead because everything changes. You learn to live hour by hour because things change unbelievably fast. It's something you can't explain if you haven't lived it.
"Give your entire attention to what God is doing right now, and don't get worked up about what may or may not happen tomorrow. God will help you deal with whatever hard things come up when the time comes" Matthew 6:33-34 (the Message)
I am completely off my sleep medicine which means I'm not sleeping well. That's always a bummer! For some reason on this trip, I have bumps all over me that itch so badly. I'm taking as much benedryl as I can but nothing seems to help. It's worse at night which keeps me up also.
Yesterday morning (Tuesday), I woke up with a nice bruise on my face. I knew sleep and I were in a fight but I didn't know how bad it was!
Monday night at 10 I had to start fasting for my blood draw. I was scheduled to have my blood draw at 9:30 yesterday morning. 9:30 turned into 11:30. Let's just say I wasn't in a great mood. We got to go eat after that though! Then I came back to have some medicines tested. We are trying to desensitize my sleep medicine so I can take it! So they had to test my levels. First, they put the different levels on a machine and somehow test me on them. Once they think they have found my levels, they skin test me. That means that they give you a little of the medicine in a shot right under your skin and see if you have a reaction. I got a headache on the first one so we tried another one. That one was fine! Now I have to take the full shot of that medicine and see if I have a reaction. If I don't, then they make me more shots and I take those everyday. It's a long process but will be so worth it!
Tomorrow (well technically today but oh my goodness I haven't even been to sleep yet) I will have another major auto-hem. We also meet with my doctor to discuss how everything is going. It will be a long day! I will update again after my appointment!