Livin like LewLew

Hey everyone! It's been a while since I last wrote.... but I have some big news!!!!!! Yesterday (Tuesday December 22nd) I got my gastro-jejunal (GJ) feeding tube taken out ... FOR GOOD ... and I couldn't be happier. If you didn't already know, I had a feeding tube in my stomach that used to be my main source of nutrition and hydration when I was sick. Because I wasn't able to eat normally due to my SMAS and MALS, my feeding tube became somewhat of a life line for me. It kept me from having fainting episodes and being malnourished. And while at times it caused severe pain and discomfort, I am so grateful that I had it. It kept me alive when my body wasn't working right. It kept me alive when I was misdiagnosed and none of my doctor's recommendations were working. It kept me alive when things went terribly wrong in my body, requiring an emergent open abdominal surgery.  It gave me strength to keep fighting, even when I was so weak that even thinking about getting ...

I know it's been a while, but I feel like now is the perfect time to do a blog post. In just a few weeks, it'll be nearly three years since I first got sick. And boy has THAT been a roller coaster. But here I am three major abdominal surgeries later and I am finally feeling good again.... actually I am feeling GREAT. And it is so exciting. I haven't been able to say that in years. I missed 2.5 years of high school due to my illness... but I worked hard to graduate on time, and now here I am in college at UNC, feeling better than good. Even though college is a little different this year (because of COVID), I am still so overjoyed that I am well enough to even be here! When you've gone through what I went through you learn to count your blessings - even if they seem little to others. I owe all of my thanks to my amazing surgeon, Dr. John K Petty. Dr. Petty is without a doubt one of the best surgeons and people that I have ever met. I remember after my MALS surgery I was s...

For the first time in 2.5 years, I can confidently say that I am feeling GOOD . My system is FINALLY working properly (especially now that we released those angry nerves being compressed by my Median Arcuate Ligament). I mean picture this: all of the nerves that supply your digestive tract are wound around SO tight that they do not work. Trust me, this messes with more than you could ever imagine. For so long my "normal" was trying to cope with an injured sympathetic nervous system. Weakness, bloating, fainting, shortness of breath, constant nausea and pain every time I ate or drank, and an inability to maintain weight. These were all some of the many things that I experienced pre-MALS surgery. Safe to say that my "normal" wasn't easy. So for me to say that I am feeling genuinely  GOOD  is something worth celebrating. Fixing my SMAS compression gave me the ability to eat and drink small amounts again. But unfortunately, it did not rid me from the pain an...

Recovery sucks. It's painfully slow and feels like it's never going to end. But it will. It seems like every time I make progress, there seems to be some new problem that pops up. Like even yesterday: I got my epidural out (which has been numbing my pain since surgery) and I've been handing it pretty well! I'm definitely sore and I feel dull pains all through my insides but I've been able to fight through that. I can handle a little pain here and there. But then when i thought THAT was the worst of it, I began violently throwing up bile - for what seemed like hours. Thankfully, I have a GJ tube that allows me to drain my stomach so I don't have to throw it all up, but it isn't fun. This morning alone I've drained 1500 mLs (1.5 Liters) of bile. That's a whole lot of bile - & it isn't even supposed to be going into my stomach!!! And then my IVs. Oh boy. Those things suck. And for whatever reason my body just can't seem to keep them. You...

Today I got to spend some time with these two girls, Sam and Allie. It was kind of crazy talking with both of them because we've all endured such similar things. Sam and Allie both had recent surgeries for SMAS and MALS. And while both of them are in recovery, they know exactly what I am going through right now. Surgery is tomorrow and I am scared. Scared about recovery, the pain I will feel, and most importantly the surgery itself. There is always the risk for complications, and while I have COMPLETE faith in Dr. Petty and his team, I am still a little nervous. I mean, not only are they cutting into my stomach, but they're going to be working around an artery. They're going to be separating the nerves that are wrapped around my celiac artery, as well as releasing the median arcuate ligament that is compressing it. I'm nervous. Nerves are so sensitive and I'm afraid that by messing with them/detaching them from the artery, it's going create overwhelming pain...

Hospitals. Something I've become so familiar with in the past 2.5 years. Between having countless tests, MRIs, CTs, tube replacements, hospitalizations, and two major surgeries, I'd say I'm pretty used to it. But, despite being so accustomed to hospitals, it's still scary for me every time I'm told that I have to go back. As you might've read in my last post, I was recently told that I have something called neurogenic Median Arcuate Ligament Syndrome, otherwise known as MALS (Click  here  to read more about it). Basically, one of my arteries is being compressed and has been causing the agonizing pain, discomfort, and nausea that I feel every single time I eat or drink. It is likely that I had both MALS and SMAS at the same time - but with my last two surgeries, we were only aware of and treating my SMAS. MALS is the leading cause of my inability to progress and get back to normal. The pain it can cause is truly debilitating but I try my best to smile through...

On Thursday (February 13th) I had a procedure known as a celiac plexus nerve block & it confirmed that I have another compression syndrome. I have something called neurogenic Median Arcuate Ligament Syndrome (MALS). Basically, one of my arteries is being compressed and is causing an immense amount of pain. It's pretty complex, but all that you really need to know is that MALS has been preventing me from getting better. It is the reason why every SINGLE time I eat, I end up curled up on the floor, stretching, trying to get rid of the bloating, pain, and discomfort that I feel. It's the reason why it takes me over an hour to eat less than a cup of food. It explains my weakness and regression. On Thursday I had a nerve block procedure where they injected two needles bilaterally into my back, digging through my skin and muscle to find the bundle of nerves that's being affected from the MALS compression. Once they found the bundle, they injected a numbing medicin...