Livin like LewLew

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...

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 ...