PROGRESS

This past weekend marked two WHOLE months since my second surgery and it's kind of surreal. Two months ago I nearly died. It was one of the most terrifying things that I have EVER experienced. My body was rejecting any and all foods and I was beginning to get severely malnourished. Internally, things were in REALLY bad shape - between my entire bowel flipping on top of my duodenum and essentially crushing it and then my gallbladder's low ejection fraction (and some other stuff that you can read about in another post). It was pretty intense. Two months ago, Doctor John Petty knew me and the severity of my symptoms well enough to open me up and operate - essentially saving my life.

I never in a million years would have thought that I would go through something so awful - but I am honestly so thankful for it. YES, it was the absolute worst. Not being able to eat SUCKS. But at the same time, I value everything in life so much more now. I value the little things, the things that no one thinks to appreciate. Things like sitting in the sun, walking down the street, being in the presence of others. I was stuck in a hospital room for nearly a month - I didn't go outside and I didn't see a ton of people. I felt isolated. Now, because of what I went through, I value every little thing so much more. Of course, I am 17 and I have those moments where things just aren't the way that I want them to be. In these moments, though, I seriously have to remind myself to appreciate the simple things. I have to remind myself that I have the upper hand in this 1.5 year long battle and that is something to be thankful for. It's crazy to think that this battle is nearly over - I still have a lot of recovering to do, but again, I have the upper hand.

Progress. One of my favorite words. It reminds me that while things aren't 100% quite yet, I am getting closer and closer to it every minute. It's a reminder that things are moving forward NOT backwards. It reminds me that I am getting better and that is something that I have hoped for since it all began - since December of 2017.

In the past two months, I have made SO much progress. My scar has healed and I'm getting a little bit stronger every single day. I started physical therapy and I am so proud of the progress that I have made. After my surgery I was in the most pain that I had ever experienced, but a little bit of that pain has gone away each day since then. When I started physical therapy a few weeks ago, every part of my body was SO weak. I've always been pretty strong, and it was just crazy how weak I had become. But I guess that's what happens when you get malnourished. It was really hard at first for me to walk even a few steps without the nagging pain in my stomach. With the help of my physical therapist, I am get stronger each and every day. My stomach still hurts every once in a while and it's still really hard for me to lift things, but again, I have made so much progress.

I've made progress eating-wise too! I am able to keep down small amounts of foods and it is such a blessing. I still use my GJ feeding tube everyday for nutrition, BUT I am able to take some time off of it when I can eat. Basically my nutritionist gave me a set caloric goal - so whatever I can't eat orally I just get through my tube feedings. Without eating anything in a day I get to take 6 hours off of my tube (which means 18 hours on it) and then I get to take off more time when I eat! I've been able to get to around 700 calories a day orally. When I can eat 700 calories, it allows me to take off 6 ADDITIONAL hours off of my tube feeds which makes nearly 12 hours total! It gives me some freedom and time away from my feeding tube, which is so nice. It takes a lot of calculations but it's all working out fine! By doing this, it'll ensure that I do not lose anymore weight - that my weight remains the same. I have a lot of dietary restrictions at the moment (no dairy, no gluten, low-fat, low-FODMAP, etc.) but it's honestly not bad. I'm just thankful that I can eat anything at all. I am so blessed that this surgery and the meds that I am taking currently are helping. It's crazy to think that two months ago I could hardly even keep down chicken broth. Now I can happily say that I am able to eat - small amounts with lots of restrictions, but food nevertheless. I know this paragraph was extremely wordy - sorry for that. (There's a lot of complex stuff with my eating and my tube feedings).

Anyways, the past two months have been difficult but they have been full of really good progress and I am so grateful for that. I have worked really hard to get to where I am and I couldn't be more proud of myself.

This past weekend, I got to go to the beach with my best friends. It was the first time that my feeding tube and six-inch scar have been seen in public. It was honestly terrifying. My best friends and family helped me conquer that fear and it all ended up alright. I had to constantly remind myself that my scar and feeding tube are reminders of all that I have been through, and all that I have conquered (and all that I am still conquering).

On January 31st, 2019, I had a surgery that changed my life. Now I know that things are only uphill from here and it's a blessing to be able to say that. I still have a few challenges that I have to face. In a few weeks, I am going to Levine Hospital in Charlotte for a few days. During the hospitalization, my motility specialist (Doctor Kelly) is going to test the strength of my duodenum and other parts in my digestive tract. We will find out then just how I am doing and what to expect. Until then, I am going to keep moving forward, making more and more 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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