Choosing my Identity

Hi friends,

Let’s be honest, blogging is definitely not my thing. I am horrible with keeping up with blog posts. However, I am feeling like a pretty official blogger right now as I am sitting in Starbucks with a cup of coffee typing away.  But to be even more honest. I’m writing this blog post more for cathartic relief than anything. I’m actually supposed to be writing a paper right now, however my mind was not on school but on the latest update I got today about the trial.

Since it’s been somewhere between a year and forever since I have updated you all, I’ll give you a quick recap of whats been going on recently. I believe that in the last blog  I shared the great news that my protein levels were down 35% (reminder: down is good, up is bad). My levels at the next visit were 22% lower than that. All very exciting!

I went back last week where they officially closed me out of that phase of the study and began the paperwork to move me on to the next phase. Then I went back again this week to begin the new study. For this study I will be in Kentucky every other week for 12 weeks for part 1 and then once a month leading up to every other month for part 4 (I am skipping part 2 and 3…that’s a good thing!). I could potentially be in this study for four years if needed, from what i understand it all depends on the FDA approval process. The fact that they moved everyone to the new study is a good sign that we are well on the way to approval.

That is the short version of a lot of updates in the trial. But now to the part that is really on my mind. This morning I received an email that my levels were up again, not to the degree that they were pre-medication, but still they were up. For those who understand PKU terms, my October level was 594 (which is pretty low considering I’m eating 20g of protein a day). My level from last week is 817. I do not have much information yet, I’m still waiting to hear back from the doctor. I was told, however, that it is not unusual for levels to go up and down for a while while in the trial.

So since this is normal, I should be good right? Logically, yes. However, I can’t help feeling anxious. It hit me this morning how little control I have over my body. I can follow the trials rules and guidelines to the letter, but that does not mean it will work. I can pray, I can be optimistic, I can say that I will be OK no matter what the results are and I can say I trust in the Lord, but that does not guarantee me anything. Throughout this process I have known that, I have known that just because I pray and trust in the Lord, that does not mean I will get what I want. And I know that if this doesn’t work for me, it does not change who God is and who He is not. He is good and loving no matter what. He is not a vending machine (excuse the cliché) and His great love from me means that He gives me what is best for me and for His Kingdom rather than what I want in the moment. Sometimes I can get caught up in the excitement and the joy of having a new hope and forget that just because I want something, does not mean it’s guaranteed.

That probably sounds like a huge bummer to everyone who has been so hopeful and encouraging to me. Believe me, my optimism is not gone, my prayers have not stopped, my hope is still there and the Lord is always good. But I think that sometimes, I need a good dose of reality. The reality is that God will use this for His good and for His glory, it just may not play out how I want it to. Again, that does not mean it won’t. I’m not guaranteed anything in this lifetime except for what the Lord has promised me. So instead of putting my entire future, my joy, my hope, my worth and my identity in PKU and this trial, I am choosing to place those things in the Lord. It is a way more secure place to be than putting my everything into my how my body responds to a clinical trial.

Thank you friends for reading my personal Starbucks therapy session and for hearing me out! Hopefully I wasn’t a huge bummer to you! Thanks for walking through this with me, love you all!