Livin like LewLew

I know that I haven't written on here in a while, but I finally had the energy to write a little about my life at the moment. Every day since December of 2017 I have fought and fought to get better. There hasn't been a day that I haven't worked to make progress - even when the odds weren't exactly in my favor. I thought that when I had surgery January 31st of 2019 that I was finally going to kick this whole sickness thing to the curb - but sadly, I am still continuing to fight through this long journey that so many of you have helped me through. In the past few months I have been trying SO hard to prove to my docs that I can get my feeding tube taken out. We put the tube feeds on pause starting in August 2019, and I haven't been using it at all since then. I've been working tirelessly to try and get enough calories to maintain my weight. I can only do small amounts every four-ish hours with lots of dietary restrictions, but I've been working so hard arou...

I know it has been a while since I last posted. Being back in school full time and dealing with some health set-backs has sucked a lot of my energy. I've been exhausted lately. Going to a full day of school and then having to study and do homework and apply to colleges on top of that is mentally draining. And then I try to do fun things that truly make my days feel better, but by night time I'm exhausted. And that's okay. I'd say I'm handling it all pretty well, considering that this is the first time in like 2 years that I have attended school full time. My weight has consistently been declining, and it's been really hard for me. If it gets below a certain point, then I have to go back to tube feeds, and I just really want to move in the direction of getting my tube OUT not going backwards. I've been working so hard to get as many calories as I can - it's like a full time job. I have to plan my day around when I can eat, and it's exhausting. Eve...

I know it's been a while since I have written, but I wanted to take a quick moment to give a little life update. First of all, it's been almost 9 months since my surgery, and I have continued to make progress every day since. It's been sort of surreal. 9 months ago I was barely able to keep down 50 calories a day, and here I am now at nearly 1700! I am so proud of the progress that I have made. I currently still have my feeding tube, but for the past couple of weeks, with doctor approval, I have not been using it. I've been working tirelessly to try and prove to my doctors that I can get enough calories orally (without the tube feeds) so that way I can get my feeding tube out. But sadly, my weight has been consistently declining, and my doctors are worried that if it continues it could lead to nutrients loss & other issues. Most people might say "well just eat more!" It's easier said than done. I had a study a few months ago that revealed that ...

I know I haven't written in a while, I've been super busy with summer, traveling, etc. I wanted to write a post more specifically to people going through a rough time. And if you fall into that category, know that there will be bad days and there will be better days. We are all going through something in one way or another. Some may be overwhelmed with school, studying, work. Some may be fighting a battle that they just can't seem to overcome. Some may be mourning a loss. We all know what it's like to have days that are never-ending. But in the end, even if the days are tough, long, and sad, try and focus on the good stuff. Being chronically sick sucks. There's really no way to sugarcoat it. There are moments where all you want to do is scream and yell, "why me?" Sometimes all you want to do is give up. I know I had moments like these. Moments where it felt like I would never be able to eat again. But despite the trials and obstacles I faced, I kep...

I realized that I mention SMAS a lot, and some of you may not be fully aware of what it is. SMAS stands for Superior Mesenteric Artery Syndrome. Only 0.3% of people in the United States are known to have it. Sadly, I was one of those people. SMAS happens when part of the duodenum is compressed by the Superior Mesenteric Artery. When this happens, it is almost like a kinked hose or a pinched water balloon. If you were to step on a hose hard enough, no water would be able to pass through. The same thing happens with the duodenum when the Superior Mesenteric Artery does this. If you don't know what the duodenum is, it is be the tube between the stomach and the small intestine. Its job is to squeeze the stomach contents through the digestive tract. With SMAS, it took away my ability to eat, because there was no way for food to pass the kink. Since I went misdiagnosed for so long, my SMAS caused a lot of damage to my duodenum. SMAS is very rare and misunderstood, and unfortunately it i...

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 mirac...

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 tha...