A Lovely Realization

Oh, life you are so confusing. I realize that's a very broad statement, but that seems to sum it up. Emotionally, physically, mentally, and spiritually...it's all confusing. There are moments I feel like nothing could get harder or more overwhelming and then they do. Yet, there are moments that I feel at peace with the ways things are. It's strange.

Just when I thought I had done all of the "soul searching" I could possibly do; let's just say I found some more soul to search. We will never be done growing and learning here on this earth. It's been quite a week. I don't know how to sum it up honestly.

Medically things are all over the place. They are constantly changing medications and routines. Which is very stressful for a girl who likes things organized. I dealt with "petty symptoms" all week. They just pile on top of each other. Charlie horses, headaches, warm to touch, toothaches, nausea, dizzy, weak legs, itching, heavy eyes, extreme fatigue, etc. The majority of the symptoms were attributed to low magnesium and electrolytes, but there are so many contributing factors. My blood sugars are still fluctuating, but are improved! I haven't had to take insulin four mornings this week because my level was in the target range! My tacrolimus level was upped to 5ml. That is the largest dose I've been on. Since we are getting farther away from the posaconozale, it hasn't shocked us that it is being metabolized so quickly. Oh, and I am absolutely thrilled to report that we are down to 10mg twice a day on the steroids! Uh huh, oh yeah.

I always complain about being tired and after thinking it through my Dad realized that I haven't gotten more than 4 hours of consecutive sleep a night since January. I wake up about 3-4 times a night to go to the bathroom because of the 10 hour infusion of fluids I receive. Plus, on steroids; falling back asleep isn't the easiest thing to do. He brought it up at clinic and they came up with a solution. We changed the type of infusion to three hours. I wouldn't mind a better nights sleep. This was a welcome change. We have used three different forms of IV fluids this week; the pump, the party ball, and the dial pro. Hopefully, the dial pro will be a nice fit for both my medication and my sleeping schedule. To be quite honest; I have no interest in learning how to use another form of IV fluids.

It's very clear that I like food. Specifically that of the chocolate and sweets variety. So much so that my Grandpa coined the nickname "Sweet Girl". (He always said it was becuase my personality, but I think it had to do with food). I had been using the excuse of steroids to consume large amounts of food. I would even dare to say I ate for comfort in those rough two weeks. Well, it's the complete opposite as of late. After one of my "aha moments" I realized I would have to face my own problems and feel my own emotions rather than drown them in a bowl of ice cream. (That and I had to start carb counting). I am so proud of how I've been eating. I am on a proper diet. It's beyond strange to me. I eat lots of vegetables and my big splurge is a bowl of ice cream. Like I said, if you know how much chocolate I used to eat you'd realize how far I've come.

We had a photoshoot about a week ago with our friend, Annie Gerber. She is an amazing photographer who wanted to capture this phase of my journey. It was so much fun! We spent an hour at a bird park here in Gilbert. You should check her blog out: www.anniegerberphotography.com.

I've struggled this week with the fact that I go to clinic twice a week and have 4 people sit in a room and decide what I do, when I do it, and who I do it with. I'm sixteen years old. I don't really like scheduled naps. My phone alarm went off and the doctor joked about it being a boy trying to get ahold of me. That shouldn't just be a joke. I shouldn't be worried about meds, shots, carbs, and insulin. I wanted to scream. I wanted to get out of that room immediately. It wasn't supposed to be like this. But you know what I realized? Right now, I don't have all of those things, but God still gave me the chance in the future. Yes, my situation sucks, but I'm still here and I can handle this. I can suck it up and get through it. There are so many other families who don't get that second chance. I'm so thankful for it. The next time we catch ourselves complaining about something small and petty; let's all promise to stop and realize that we could have it a whole lot worse.

I want to make one thing clear: I'm going to keep going. You don't have to remind me to "keep hanging in" or "we're going to get through it". I know that. I believe it whole heartedly. Right now; I'm just trying to manage everything being thrown my way. My suffering is for a greater purpose. I'm not sure what it is, but my pain is not pointless. God's got a plan. And that gives me the ability to push on.