Hope.

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 kept pushing. I chose to stay hopeful. It was definitely not easy, but I tried my best.

For months I was told by doctor after doctor that there was no physical explanation for my inability to keep food down. They told me that it was in my head, that I was having a "brain to gut response". They told me that I was throwing up because I was under a lot of stress. They told me that I would have to wait for a program in Ohio that would teach me to reswallow my vomit. There was a six month waiting list for the program, so until then they told me to meditate and do breathing techniques. And yes, that was their ONLY plan. I did all the things my doctors asked of me, even though I thought their diagnosis was wrong. I just wanted to get better. Despite all their assumptions, I stayed hopeful, because I knew that someday I truly would get better.

I didn't fall into the criteria of their diagnosis. It made absolutely no sense. And the people that knew me best, knew that it just didn't seem right. My doctors had looked for potential diagnoses for only seven days, and then they put on my chart that it had to do with my brain. My family and I fought to get more answers from these doctors, since they clearly didn't look hard enough. We kept pushing, knowing that someday we would find someone, something that would get me better. And because we didn't give up, that day eventually came. It took a while and we saw many different doctors, but we finally got the answer we had been looking for. Six months after my symptoms appeared, we were able to find the correct diagnosis that led me on the path to getting better.

I was so lucky to have people that fought for me as hard as they did. My parents fought harder than anyone I know. I had doctors who thought we were crazy to keep looking for answers. And when these doctors refused to keep looking, we found other doctors who were willing to help. I had one family friend, Dr. Frank Agatucci, that helped push us to keep searching. He didn't give up on me. He helped us figure out what was truly wrong with me. The thing about my diagnosis was that it was only visible when I was non-supine, which is very rare. Since most tests are done lying down, it was hard to convince doctors to even consider doing a test standing up. Many said that the position shouldn't matter, but in my case it did. We were eventually able to have the test done both horizontally and vertically, but my parents had to fight like hell for it. And on May 10th, 2018, I was diagnosed with positional Superior Mesenteric Artery Syndrome. (If you don't know what that is, I have another blog post describing SMAS linked at the bottom) On that day, we proved that my inability to eat and drink was because there was a PHYSICAL, structural problem going on. All those doctors that said it was a "brain to gut response" were proven wrong. And if that right there isn't hope, then I don't know what else is.

We tried medicine and other approaches to try and get rid of my Superior Mesenteric Artery Syndrome, but after a few months we realized that the best option was going to be surgery. In September of 2018, I had surgery to fix my SMAS. The surgery done by my angel, Dr. John Petty, was successful because it removed the compression of the Mesenteric Artery from my duodenum. I was able to eat and drink for the first time in 10 months.  Unfortunately, I began to have difficulty eating again two months after the surgery. In January of 2019, we learned that a freak accident had occurred internally and I had to have major open abdominal surgery (If you want to read more about what specifically happened, I attached another link to one of my blog posts about the surgery).

It is now August of 2019 and I am happy to say that I am FINALLY on a path to getting better. I've come a long way since it all began in December of 2017, and I am just so proud of myself for continuing to fight through this long battle. It took a very long time to find my diagnosis and an even longer time to get my digestive system structurally better. But I am living proof that it is possible. It might've taken two long surgeries, but they made it so I have the chance be healthy again. They gave me hope.

I am currently able to eat around 1400 calories by mouth per day, through small, frequent meals. I get the rest of my calories through my GJ feeding tube at night. I am able to sit at the dinner table with my family again, and that right there is a blessing itself. For so long I was starving, unable to eat or drink, and while things aren't 100% quite yet, I am so close.

I guess the whole purpose of this post was to show you that if you keep fighting, you can achieve a lot. I know, it's easier said than done. I know I had times when all I wanted to do was give up. I remember one day after surgery I was in so much pain. I was throwing up liters of bile, and I just couldn't stop crying because I didn't know when my body would ever work again. It was one of many traumatic nights, but I vividly remember finding something to laugh about. Even during the very worst moments, I had to remind myself that as long as I laughed more than I cried, it was a good day. And I've learned that this is one little secret about life that can apply to everyone. "Cry a little, laugh a lot" CR. When you're able to shift your mindset, it makes it a lot easier to persevere.

I would have posted this sooner, but a few days after I first wrote this, I had a feeding tube crisis. Currently, the balloon that holds my tube in place has shifted its placement and is causing severe pain. Last night the pain was so horrible that I was crying. I couldn't move without feeling like I was being stabbed. It was really hard but I knew that there was nothing that could be done since it wasn't technically an emergency. After some tears and a phone call from my surgeon, I ironically decided I had to follow the advice that I wrote about here. Sometimes it's difficult to not feel overwhelmed and frustrated especially when pain is at play. Last night I knew that I would be at the hospital again on Monday, having another tube replacement, so I paused for a moment and realized that this could be a way for me to follow my own advice. It was not easy, but I took a deep breath and remembered I could not end my day crying more than I laughed. The night got better.

https://livinlikelewlew.blogspot.com/2019/08/what-is-smas_4.html

https://livinlikelewlew.blogspot.com/2019/02/surgery-update.html