My Gastroparesis Journey

Many of you tuned in back in the fall when I got sick, for no known reason, and was later diagnosed with a rare condition called Gastroparesis. I thought it would be a good time to share an update with you all.

First, what the heck is it? It's a motility issue with the stomach. Gastroparesis basically means stomach paralysis. In a nutshell, my stomach has a hard time contracting so my food can't break down. This limits what I can eat. The harder it is to break down, the sicker I am. My diagnosis has no known cause and is considered idiopathic.

Although I sit here feeling awful as I type, I can say with some optimism that things are going okay. For the most part. This has been a difficult, and challenging journey. And I never realized how much I took food, and my ability to eat so much (both quantity and variety) for granted. I feel a little (ok, a lot) robbed of this. Life is so short to not be able to splurge once in a great while. But I am learning, very quickly on days like today, that those splurges are certainly NOT worth it for me.

Two nights ago, my family had tacos for dinner. We used ground turkey instead of beef to accommodate me, and then I made the stupid decision to dress my taco with lettuce and tomato. Along with cheese and taco sauce (those two haven't been a problem). I was warned against lettuce on every site, pamphlet, print-out, and book I've consulted, but didn't actually know how I would respond to it, and well, let's be honest, there isn't a lot of lettuce that can fit into a crunchy taco. So I took the risk. And am still paying for it 48 hours later.

How I feel about Gastroparesis

For the next few days, I am back to a liquid diet. Which is a collection of random drinks to make sure I get as many calories, sugars and proteins that I can to sustain myself. Things like Gatorade, Sprite, Coke, Ginger Ale, and my personal favorite... fat-free beef bouillon. Throw in 6 crackers for three meals a day and that is my very enviable diet. I've had to do this a few times now, just to re-set my tummy, so to speak.

So, when I get sick, what is it like? I'll be straight with you... and if you decide it's TMI, well, I'm sorry about that. My symptoms are nausea (occasionally I vomit, but that hasn't been a prevailing issue... whew), a LOT of stomach pain. And in the stomach, so that pain is up in my ribcage, near my diaphragm. It's often the kind of pain that makes it impossible to breathe. Depending on the severity, ibuprofen can be semi-effective. Although not the cure. Terrible heart-burn and indigestion. Then (and here comes my favorite) flatulence. This one isn't immediate and tends to come on the tail-end of an episode, but it comes and it stinks. Seriously, I could clear a room in .3 seconds. This really can't be that much TMI... we all toot.

Now, I don't share this with you because I want any kind of pity. In fact, if you've got pity, check yourself at the door. I have enough for myself. I really am just sharing this journey, which is proving to be quite the rollercoaster. But if my track record for life, in general, is an indicator of anything, I am certain that I will be just fine. Right now I'm in trial and error phase. Error being lettuce on my taco. Another big mistake was popcorn. Oh yeah... that one was miserable. Even worse than the lettuce. I got yummy popcorn as a gift for Christmas, and couldn't resist because it was popcorn and that is TOTALLY one of my vices. Not anymore. I was definitely on my liquid diet after that one. And then on NYE, I went to a movie with my kids and friends, and I didn't even want one little kernel (and trust me when I say that is a true testament to how sick I had been that it would deter me so greatly... I NEVER shared movie popcorn). So now I can scratch those two items for sure off my list. On a plus side... Del Taco has a delicious beef and cheese burrito and when you ask for a taco without everything except beef and cheese, they really do fill that crunchy shell. I'm seeing a pattern here... tacos!

What, you may be wondering, do I eat these days (other than tacos)? It's not exciting, but I get so nervous to try things that I chicken out and go back to the bland and safe. White rice. I eat that stuff more than they do in Japan. No joke. Tim makes me a giant pot twice a week and I live on it. Bananas. Toast with sugar-free jam. Chicken. Pasta. Potatoes. Protein shakes, and a small glass of pomegranate juice once a day. But no meats like sausage, bacon, prosciutto, pork, or red meat that isn't ground. I can eat cake. Which is good, because as my birthday approaches, there will be cake. Lots of cake. And I'm not even going to be sorry I ate it because I can't eat most of the other things that I love. So take that gastroparesis! I can't even think about what else I actually do eat. Cheese pizza. And Diet Coke. And coffee. On low-calorie days, caffeine is my lifeline. Which actually can make others sick, but (KNOCK ON WOOD), I haven't had any problems. Man, reflecting on this diet is depressing, so I'm going wrap this up.

I've had a wonderful support system. This has been an emotional journey just as much as a physical one. Tim is so willing to accommodate me. And I'm learning that I like tofu more than I ever thought I would. Oh, tofu... you can add that to the list of what I can eat. If you invite me to a party that is centered around food, at least at this time in my journey, I may politely decline your invitation. Don't take it personally. If I plan ahead, I can still make a lunch date with you. And by all means, if you have any recipes out there that sound like something I can eat, send them my way!! I can always adjust accordingly.

I have so much love for my friends and family who've got my back right now. They're my crutch on days like today, which are totally pity-party days. But like I said, hold your pity. I got this.