Tuesday, May 10, 2016

Update and Thoughts about Life!

Update on the update: I just finished 10 days of IV antibiotics for the staph infection. I also got IV fluids every day. Please pray we get the staph under control and totally gone!!!

Thank you all so much for your continued prayers and encouragement! 
I feel led to share something with you all because each of you truly make a difference in my life, but first, here's an update! 
Last week I saw my primary care doctor several times, and he sent me to the hospital again on Wednesday. The harsh antibiotics, along with the pain of the staph infection, have kept me from eating and drinking, so I needed IV fluids and medicines to help the nausea and pain. I also received IV antibiotics. I'm now on my 3rd oral antibiotic since last week, and after all we did last week, we think that we're finally on the right track to treating the staph with the right medicines! 
I will be seeing an infectious disease doctor any day now because I shouldn't have gotten staph again so fast. The infectious disease docs can do tests and biopsies to determine if/where the staph is possibly hiding, and they can also help decide if my internal heart monitor needs to come out. It's all speculation at this point, but it's possible that the staph could be attaching to the monitor, which could prevent the staph from going away. The docs can also help me figure out how to prevent more staph infections, because if I'm not careful, I could get them a lot. Hopefully they will be able to help me a lot. So that's where we are right now, and I'm so grateful for doctors not giving up on me and we pray that the staph is totally gone soon! 

What I wanted to share with you...
Over the past 2 weeks, I've let my current circumstances steal my joy and I've lived in fear. 
I don't need to go into details about how I've been feeling physically because you can imagine how I'm feeling with the normal feeling worse after the stem cell transplant + the staph infection + all the antibiotics and side effects that comes with those. 
I get really depressed when I have to be in bed because of being sick. I hardly ever stay in bed most of the day, no matter how bad I feel. Going downstairs and simply opening the back door makes me feel better because I think it helps me see that life is still going on and there's a bigger picture. I see that for me, getting out of bed is like me saying, "I am stronger this this disease and I'm proving that by getting out of bed"! I know others who do better resting in bed, so there's nothing wrong with staying in bed at all. For me, it's just not the best. The weakness from everything right now has kept me in bed a lot because I just don't have the energy to go downstairs sometimes. And being in bed during the day so much depresses me because when I first got sick, I was totally bedridden and so weak like this. It reminds me of those days where we didn't know what was wrong and it's a horrible feeling!
The past few days I've been downstairs more and am trying to stay out of bed as long as possible because it's good for my spirit, but I'm just still really weak. I did sit outside this morning and it was wonderful! 
Recently, I realized that in an unhealthy way, I'm so focused on what's happening right now.

On April 21st, the day I got my stem cells back, I said that it was a new birthday for me, a new chance at life. And I said that because it IS!!!!!!!! I said that I knew I would feel worse for a while before I got better, but that's okay because it would be temporary. I said it over and over and over. 

But I haven't actually been living like I believe that, and I've lived in fear since the staph came back. 

I am SO, UNBELIEVABLY blessed that I was able to finally have the stem cell transplant after being sick for almost half of my 23 years of life. It's giving me another chance at life, and not many people get that 2nd chance at life!

Many of you know that one of my best friends, Rebecca, died of cancer 4 years ago. She would have turned 25 this past Saturday. So on Saturday evening, my family and I went to the cemetery with her parents. I was still so weak but wanted to go, so I took a towel so that I could sit on the ground. Oddly, sitting on the ground was really different than standing there like we always do. Instead of looking down, I was looking across and it gave me whole new perspective, which I'll explain more about.

I then got a much needed big smack on my face. I sat there and wondered what am I doing?! WHY am I so depressed? WHY am I not living like I have another chance at a healthier life, because I do!! Rebecca would have given anything to still be on this earth, no matter how bad she felt. Quite frequently, she and I talked about longing for Heaven and no pain and sickness, but she and I agreed that no matter how we felt, we wanted to live on earth longer with our family and friends before we go to Heaven. 

So there I was, sitting at her grave, and I realized I've been having a pity party because of temporary things I'm dealing with like the staph infection again and feeling worse for a while after the stem cell transplant, but I have no reason to complain! 

Without the antibiotics for the staph, I possibly wouldn't be here today. I have selfishly hated the antibiotics because their side effects are far less than pleasant right now, but people all over the world die every day from something that could be so easily treated with antibiotics and modern medicine. I don't HAVE to take the antibiotics, I GET to take them. Yes, the side effects have sent me to the hospital, but it's temporary. 

I've come to realize a lot lately. 
Like I said, I've been in bed a lot over the past couple of weeks and I didn't see something that had been right in front of me until a couple of days ago. I was always looking down in my bed while watching something on my iPad or whatever, and if I would have just lifted my eyes, I would have seen this sooner. I put those on my wall for a purpose. 

Again, like I mentioned, every time I've gone to the cemetery in the past, I've stood and have had to look down at the graves. But Saturday, because of me being so weak, I had to sit down, and my perspective totally changed. If I was standing up and looking down at the grave, when I lifted my head I would have seen across the whole cemetery and would have seen the countless other graves. And nothing is wrong with that. But when I looked up while I was sitting, I saw the beautiful sky and sunset, the trees, and all of God's creations. I smiled because I just was in awe of God. It took me being too weak to stand for me to lift my eyes. 

And it's the same way with God. I've been so focused on what's going on right now and I've had my head down. I temporarily lost sight of the goal and took my eyes off of Jesus. And that's why I've let my circumstances steal my joy and cause me to live in fear. 

In Hebrews 12 it says this:
"Therefore, since we are surrounded by such a huge crowd of witnesses to the life of faith, let us strip off every weight that slows us down, especially the sin that so easily trips us up. And let us run with endurance the race God has set before us. We do this by keeping our eyes on Jesus, the champion who initiates and perfects our faith. Because of the joy awaiting him, he endured the cross, disregarding its shame. Now he is seated in the place of honor beside God’s throne. Think of all the hostility he endured from sinful people; then you won’t become weary and give up"

No wonder I've been so weak and weary! If our eyes are not on Jesus, we can't run this race without looking down. Without our eyes on Jesus, during the race, we feel like we need to look down to see the roadblocks coming. We need to look down to see the twists and turns on the course of the race. We look down out of fear because we don't know what's coming up next. We are then blindsided at sharp turns and corners. 

But when we fix our eyes on Jesus, we don't NEED to look down because we know that we will make it safety to the end one day! He will pick us up and carry us over the roadblocks and He will hold our hand and walk with us when the road turns. Nothing surprises Him! That's how we can have perservence through this sometimes horribly long and painful race, because when we can't run on our own, Jesus picks us up and carries us! 

Also from Hebrews 12: "So take a new grip with your tired hands and strengthen your weak knees. Mark out a straight path for your feet so that those who are weak and lame will not fall but become strong....
...Since we are receiving a Kingdom that is unshakable, let us be thankful and please God by worshiping him with holy fear and awe. For our God is a devouring fire"

I'm 19 days into the critical 90 days after transplant! I've made it 19 days!!! 
I do want to apologize to you all who have been faithfully praying for me and supporting me in so many ways, and especially helping us financially so that I could have the stem cell transplant in Germany! I want to apologize for letting my current circumstances steal my joy. This isn't the first time it's happened, and it won't be the last, but I just want you to know, I'm BACK and my eyes are on JESUS because I need to be carried through this part of the race, and I am. He's here. Please don't stop praying. Your prayers have helped carry me when I've selfishly taken my eyes off of Jesus. I'm moving on to my new life because of God! 

"Why am I discouraged? Why is my heart so sad? I will put my HOPE in God! I will PRAISE HIM again--my Savior and my God!" Psalm 43:5

If I can smile and laugh through the transplant and after, I can do it now because I have a new chance at life!!!! I'm so blessed!!!!!

I do ask that you specifically pray that the stem cells are doing what they are supposed to be doing. We don't know if they could have turned into immune cells to fight this staph, but we will be talking with one of the doctors tomorrow about that. Please pray that the stem cells are letting the antibiotics fight the staph so that they can heal the rest of my body eventually. 

One of my dear friends who has Lyme just recorded a new song called "Lift My Eyes". That's not a coincidence at all that I just heard this..

"Many are the weapons of my enemies
Right here in this moment give me eyes to see
The God of Angel Armies is surrounding me

I will Lift my eyes
To where my help comes from
I wont be afraid
I wont be undone
Youre more faithful Lord
Than the rising sun
So I will Lift my eyes
to where my help comes from

Nothing formed against me ever could invade
For you are my fortress in the darkest day
Oh I will simply rest and trust you come what may
My help comes from the Maker
Of Heaven and of Earth
My help comes from the Savior
Who saved me by his Word
My help comes from the Healer
Whose stripes have made me Whole
My help comes from the Keeper
Of this peace inside my soul
I will Lift my eyes
To where my help comes from
I wont be afraid
I wont be undone
Youre more faithful Lord
Than the rising sun
So I will Lift my eyes
to where my help comes from"

These are my 4.6 million stem cells that I received!!!!

I love you all so much and can't thank you for all you've done. "I thank my God every time I remember you" Philippians 1:4

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