Arizona

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”

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The Darkest Nights

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I need to be reminded daily that hard times can produce lights or even darker hearts.

“Faith I can look up to”

So I leave for the Mayo Clinic in 8 days. I’m sad to say the fear of nothing happening out weighs my hope of healing. I do know something good will come of it. God is in the midst.

I received a letter the other day that touched me in a way that no words really ever had. It hit so hard at what I’ve desired to come from my sickness. It gave me a joy that this isn’t all for nothing. The Lord really is at work. I learned at a young age to not care about the physical appearance so it was always hard to relate to girls for me because I know that’s what we’re pushed to do. To look like those girls that are touched up in magazines.. To be perfect. But none of us are. My body was far from perfect, on the inside especially. So I didn’t really care about the out. I need to be reminded though to not be consumed with getting the inside perfect and healthy but really my heart. My soul. We’re not on earth to be perfectly beautiful and healthy creatures (although it seems like some have it all you don’t know their heart). We’re here to be a light in this dark world. I pray that that above all is my hearts desire. I long so badly to be free from all pain and suffering, and fear that being sick has brought but I want to long even more to be like Jesus. To love the unlovable, to be gracious, kind, understanding, a joy to be around.. And very forgiving.

So from a younger age I saw things differently. These words I read gave me a hope that all this hasn’t been for nothing. That the Lord has used my bad for good. I feel so beyond grateful. The girl that wrote me this letter we may have talked once in our lives but I’ve always just thought she was a stunning girl. These are her words:

This letter is a couple of years too late, but nonetheless, I wanted to share with you how you’ve inspired me. This may sound strange because we don’t know each other very well, but I have always looked up to you. When I would see you at church or see your activity on MySpace (lol), I thought you had the best style. I remember that you weren’t afraid to be natural, and you always looked so beautiful. I have what I call the “lion hair” as well and I used to be SO SCARED to wear it unstyled. It also took me a long time to go anywhere without makeup. You have influenced me through your own style and confidence to be secure in my natural beauty and a couple years ago I decided that I’m beautiful, just as God made me. I was told briefly by a friend about what you’re going through and I’m so sorry. You show such strength and dignity, grace and loveliness. You entirely emanate a beautiful woman of God and I’m sure you reach so many people that you don’t even know. Proverbs 31:30-31 says, “charm is deceptive and beauty does not last; but a woman who fears the Lord will be greatly praised.” You have such a unique opportunity , to witness to those who are sick, to show (as you have already) the joy the Lord brings in your life. I want to encourage you that no matter what the Lord places in your life, to know you are shining and He works everything together for good. Thank you for having faith I can look up to.

With love, C

Just writing down her letter I’m crying. I didn’t show this to puff myself up but to show how much those words meant. Through suffering… Goodness comes. When you suffer you have the opportunity to show love and be a light or to become bitter and hard. I struggled with the latter for years but am glad I’m free of that. He works EVERYTHING together for good.

Thank you to all have said my suffering has encouraged them and I’m sorry to those who have heard me complain.

Thank you for your support friends xox