What's to Come

Recently, I had a pretty big medical exam called an antroduodenal monometry study. The test showed us the function of different parts of my digestive tract. It was a pretty awful, lengthy test, but I won't go into much detail. All that's important is that the test revealed that the section of my duodenum that was damaged has not recovered. My duodenum suffered for over a year, and it just hasn't been able to regain its full function yet. We are hoping that with time it'll heal and start working as it should, but if this doesn't happen then I might need to have another surgery. We are praying that another surgery isn't necessary, but if it is we will find a way to get through it.

We didn't get the results that we had hoped for, but it is what it is. I guess the real question is what is my life going to look like until things are normal again? It's a pretty hard question. Currently I am able to get around 1000 calories by mouth which is an ACTUAL miracle. I am able to eat small amounts of food four-ish times a day. I use my feeding tube at night to get the remainder of the calories that I need. My feeding tube was supposed to be short term, but it looks like I'm going to have to have it for a few more months - or until I can prove that I can eat normally again. With a GJ tube there are certain limitations. Since the tube is so long, reaching from the stomach all the way through the small intestine, it means that you have to be more careful with it. If it twists out of place or comes out, then it can require an emergent replacement, which would not be ideal. The tube is secured in place by a balloon, but if one were to do something strenuously or abruptly they could mess up the tube's placement. There aren't tons of limitations, but the one that kills me the most is that I probably won't be able to play volleyball with my tube in. My number one goal for 2019 was to gain enough strength to be able to play volleyball for my senior year. It's something that I've really missed being a part of, and I really don't want to miss out on ANOTHER thing. But I also know that if I played and dove for a ball it would easily risk displacement of my tube, which would be both painful and terrifying. January of this year I was at my weakest point ever. Due to the compression of my duodenum and the adhesions that wrapped around it, the only thing I could keep down for several months was chicken broth. I became severely malnourished and had trouble walking without feeling like I was going to faint. It was not fun. For the past couple of months I've been working really hard with my physical therapist to work through the post-surgical pain and to get my strength back. Even though it's likely that I will not be able to play volleyball next year, I am still going to work my butt off to get as strong as I can. I hope that I NEVER have to experience the debility and weakness that I encountered throughout my illness again.

Due to being sick and this long recovery time, my stamina, both physically and mentally, has diminished and I am currently slowly trying to build it back up. I was out of school for several months, but with the help of my wonderful teachers I have been working tirelessly to complete my junior year of high school. I'm not going to lie, it's been really hard for me. Tasks that were once quick and easy, now seem to take away every last bit of energy that I have. Tests exhaust me more than you can ever imagine. A few weekends ago, I took the SAT for the first time - I've been too sick and weak to take it before now. Anyone who has taken it will tell you that it is exhausting, but for me it drained every ounce of the already low energy I had left. Honestly, it was defeating. This test counts for so much and I know I didn't perform the way I once could have. My stamina is really low right now and it's definitely limiting my academic capabilities. But you know what, that's okay for right now because it WILL get better. I'm pretty behind on the stuff that most juniors have already completed. And if you know me, you know that I am usually one of the people that is ahead of the game. Because of this illness I've had to learn to truly take things day by day. Throughout my entire illness we never knew what each day was going to be like. There was no way of planning anything as if it was normal, because I just wasn't normal. I was weak and had no extra energy to give. I couldn't think about the things that most juniors stress about. I couldn't worry about SATs and ACTs. I couldn't worry about which colleges I wanted to look at or taking tons of AP classes. The only thing I could truly worry about was whether or not I was going to be okay. Towards the end of 2018 and beginning of 2019, things had begun to get really bad. At this time, all I could think about was how much pain I was in and the little energy that I had. Thankfully though, I had two surgeries that saved my life and because of them, I am now able to think about what's to come. I am able to think about SATs, school, college, things that every other junior is thinking about. And while thinking about my future is nerve-racking and has been stressing me out, I need to appreciate that I even have the opportunity to think about it at all. For so long we were worried about my declining health and while things aren't where we had hoped, my medical state has definitely improved.

Even though the study revealed that things are not normal, my lifestyle is far better than it was before. My diet is pretty limited and I have to have really small amounts of food, but I don't mind it at all. Being able to sit at the dinner table eating with my family is something that I wished for every single day of my illness, and now I can happily say that I can. Being able to drink water when I'm thirsty is a blessing, because for so long I wasn't even able to do that. Being able to say that I am full is the best feeling in the world, because I was starving for nearly 450 days. Even though I'm not back to "normal," I am okay. For a while, we didn't know if I'd be okay, but as of right now I am doing just fine. I am still living, breathing, SMILING, and that's what matters. I know that my duodenum hasn't healed yet, but I am still proud of where I am right now. And while my stamina is low and I might not be able to play volleyball next year, it will all work out. I just have to address those challenges the same way that I went through this past year, one day at a time. Someone who has helped me face each day with courage once told me that "Rome wasn't built in a day, but it was worked on every day." For me, getting through each day is considered progress.

I suffered from Superior Mesenteric Artery Syndrome and the effects of it. If you want to read more about it click here. https://livinlikelewlew.blogspot.com/2019/01/my-story_24.html

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