I’m sitting at the airport on my way back from Maryland for my 6 month follow up appointment at the NIH. Wow, it’s been 6 months. Honestly, in some ways it feels like time has flown by yet in other ways it has taken forever to get to this milestone. It’s kind of like raising kids - - the days are long but the years are short. If you would have asked me 4 months ago what the future looked like, I don’t think I would have had a very optimistic answer. This road has been rough to say the least. As much as I have tried to keep a positive attitude, roll with the punches, and be thankful I’ve had the opportunity to make a choice rather than sit back and let my genetics make a choice for me, it - has - been - rough. I’ve been beating myself up for not writing about my experience as much as I planned on doing. It’s just like anything else thought, right? You do your best in the moment and I’m learning to be more kind to myself. However I still feel the need to reflect on why I haven’t been blogging as planned. I think there are several reasons. Like I wrote about in my last post, I’m learning to really live in the moment since no next moment or day is guaranteed. While living in the moment with my kiddos, husband, family, friends, and work it is challenging for me to prioritize sitting down and writing about my life. So that’s one reason. Time is a huge factor as well. When I have the time without distractions (and I really like to focus when blogging/journaling) I’m pooped. It’s hard enough to accomplish all my motherly and wifely duties while still staying balanced myself that, again, writing has just not been a priority. Which I’m not proud of. I started this blog to journal my stomachless journey so I can reflect on it myself and to help other people in the same or similar situation. And now I’ve/we’ve missed out on 4 months of record keeping. Again, being more kind to myself. Lastly, this road has been much more difficult than I could have ever anticipated and when you’re not feeling well all you want to do is coast. Before surgery I considered myself a doer, a go getter, high energy, and never wanting to sit still. There’s just too much to do and so much life to live to sit around. The last six months has taught me that it is okay to sit around. My body has needed to heal and rest. As much as I tell myself I’m being lazy when the kitchen is a mess, the laundry isn’t done, and the kids and I are watching another movie, I’ve realized this is okay. The kids love to sit and watch movies with me. We also love to play cards and legos. This summer has been the best summer I have had with the kiddos since Emma has started school. I thought it was going to be a nightmare to be frank. If you know my little girl at all, you would know she is not an easy child to say the least. She is my fierce, assertive, outspoken, passionate, decisive fire ball. So she can be quite challenging most times. But this summer we spend so much good time together. When we weren’t at the water park (where they ran and played and I floated around), we were doing chores, playing games, entertaining our animals, watching movies, and planning our next adventure. All 3 of us (Owen too - my 4 year old son) in perfect harmony (most of the time). My husband was around too; I just don’t work as much as he does, so the kiddos and I have a lot of time on our own. And I loved (almost) every moment of it! And I want to tell you about our very first family camping trip, but first I’d like to touch on the awfulness of the first 6ish months of stomachless life. And only for the purpose of being able to look back and reflect on how far I’ve come but also to reach those that are currently struggling with the roller coaster ride.
In my experience, this journey is perfectly described as a roller coaster ride. There have been so many up, downs, twists, turns, tunnels of darkness, and light at the end of those tunnels. I know I’ve touched on this a bit here and there, but I’d like to go into a bit of detail of the day to day life without a stomach thus far. Learning to force yourself to eat even when you don’t feel hungry and worst of all when you feel like vomiting is very real in the first few months. The nausea got so bad that every time I ate I wanted to vomit. Then the food aversions developed. I had never really thought about the psychological aspect of food aversions before this. But my dietician gave me a pretty comprehensive lesson (over several weeks) on this and how to overcome my brains bad relationship with food. It was hard work and actually still can be an issue at times. But things have gotten exponentially better. I am actually enjoying food again. I am having cravings for good healthful food. I still get cravings for crap food too, but not near as much as before surgery. I’m enjoying being in the kitchen again. Before about 5 weeks post-op I could not cook a meal for my family. If I mustered up the energy and ‘stomach’ to do so, I wouldn’t be able to eat that food (because of the whole food aversion thing) which then meant I was preparing something else for me to eat. Even watching cooking shows that I used to really enjoy watching, was nausea provoking. That was one of the tunnels of darkness on this roller coaster ride. One day would be just that bad, and then the next day was a good day (the light at the end of that tunnel). Day to day just like that. I have to add that my surgical team prescribed me a medication called Marinol, which helps with nausea and appetite. When I started taking this it was a game changer! I would take it and know within the hour I would want to eat and I could do so without getting nauseated. So I started taking this a couple of times a day. Since Marinol is a synthetic form of marijuana, I can’t be taking it while working. So I learned my days off were far better than the days I worked because of this. And there have been days I’ve had to call out sick because the nausea was so debilitating. So I would stay home, take the Marinal, focus on drinking and eating, and usually be feeling better by the next day. Before the Marinol days the bad days would consist of me resisting drinking and eating because it didn’t make me feel good. Which would then lead into more problems the next day. I’ve definitely learned to lean into this discomfort of nausea. Most of the time when I feel nauseated it is because I’m dehydrated. So now when the nausea starts to kick in, I force myself to sit down and hydrate. Sometimes it just takes a few minutes of intentionally hyrdating to turn things around for the day. Since learning this, my good days have started out weighing my bad days. And now I can have a bad moment and turn it into a good day which has been amazing. Which leads into the next challenge. I have’t always known what I need in the bad moments. In fact, I would only have bad days, and not bad moments. A moment is fleeting where days last so much longer. And I could have several bad days before a good day came. I would try to remember exactly what I did on the good days to replicate it the next day. The most frustrating part is it was almost never successful. How can you do everything the same and get a different outcome? Isn’t that the opposite of insanity? Anyway, I digress. I would get so annoyed when I perfectly replicated what I ate and drank on the previous feel good day and I would still feel like crap. Welcome to the early days of having no stomach. My surgical team reassured me too many times to count that this is all part of the process. My intestines are learning to digest food in a completely foreign way. They are not used to receiving chewed food and being expected to absorb the nutrients from food that hasn’t been completely broken down by a stomach. It’s like by dietician said, my intestines are like “good morning, where the f*%$ did that stomach go? This isn’t part of my job description. I’m not doing that.” and then the next day “he still hasn’t come back? Why the f*&$ would he leave us? “. And put this on repeat for a whole year. Hopefully one day (my dietician says about a year out) those intestines of mine will wake up and say “well, I guess that stomach isn’t coming back, so I better get used to this”. So now that I’ve gone over some of the downs on this roller coaster ride, it’s time to tell you about our summer camping trip. (this is where I’d like to add photos, but I don’t know how to do that 🤫)
Since I wasn’t sure how I would be doing this summer we decided not go on a big family vacation with the kiddos. Instead, we decided to rent a camper and go to the pines for a long weekend. Matt and I were a bit nervous about this since neither of us had been camping since we were kids. Crazy, I know! Let me tell you … we had a blast!! We drove up to northern Arizona and found a great remote spot just off one of the forest service roads. We had a perfect view of the San Francisco peaks with a beautiful meadow in the foreground. Packing obviously took quite some effort. In fact my husband can be given most of the credit for doing all the physical labor of getting ready (i.e. packing up all our stuff, picking up the camper including 2 hours of tutorial from the owner, and driving us to our serenity in the woods). We got there just in time for it to rain. Monsoon season is so unpredictable but this rain was just a light drizzle which was the perfect start to the weekend. The kids and the dogs ran and played the entire weekend. Surprisingly the dogs slept like babies in the camper because they were so worn out from running all day. And that’s exactly what happened with the kiddos as well. Mornings were brisk and chilly. The kiddos pooped in a hole for the first time in their little lives. Owen couldn’t stop talking about how much he loved camping. We played card games, sat in hammocks, collected pine cones, when on lovely walks, blew dandolions, saw wild cows, felt cool breezes, played hide and go seek, and much much more. It rained each afternoon which dampened the air just the right amount. By the end of the weekend the kids and the dogs were more filthy than I’ve ever seen them This really made my heart happen. This meant they had the best time and Matt and I had the best time watching them that weekend. We will definitely be going on more family camping trips.
And now I know the main reason why I haven’t been blogging, Because it takes me hours to compile this! I’ve been writing this since the flight to Maryland yesterday. So forgive me for any typos or gramitical errors as this is me. Raw and unedited (mostly). I need to write at least weekly to avoid this lengthy time suck. Okay, I’m putting ‘write blog’ on my calendar weekly right now (yes, as I type this). Let’s give it a shot and see how it goes.
