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New Normal

I had originally planned to share a health update last weekend, but I felt myself go speechless as a result of COVID-19. I wasn’t sure how to talk about me when my heart was aching for Italy, children, parents, physicians, the newly unemployed, and the world. So first, how are you doing? Tell me in the comments. Tell me if I can help you. I’ll share how I’m doing, too.

I’m doing OK. I’m adapting. I’m not sure how long life will be in a quarantined state, so I’m figuring out a routine, settling in, and giving thanks. I have a lot to be thankful for and the list grows each day. Right now, my top 4 are:

  1. Actually getting to see my husband

  2. Being able to work remotely

  3. Having abundant technology at my fingertips to stay connected and entertained

  4. Having outlets to stay active at home

That last one, “staying active at home,” is a pretty big one and where my health comes in because being stuck at home is something I am familiar with. I’ve spent months on the couch focused on getting my heartbeat under control or willing nausea to subside. Here’s a little more of the backstory:

About 4 years ago, I thought I was getting a cold, but that quickly spiraled into something bigger:

  • In the first 4 weeks, I couldn’t keep anything down, including water (don’t worry, I got IVs!).

  • I rapidly lost a lot of weight that I couldn’t regain.

  • A good day was getting in 500 calories on an all liquid diet.

  • I had a dozen tests that were all normal.

At month 4, I finally got an answer: gastroparesis. A gastric emptying scan revealed I couldn’t digest food normally (and I got to eat a radioactive egg!).

As I write this, I’m shocked it was only four months waiting for a diagnosis. It felt like a lifetime. Physically, not being able to eat or do much of anything was a huge shift. Mentally, I felt like I was going crazy. Looking normal on the outside with no explanation for why I couldn’t eat was driving me bonkers. When people would comment, “You can’t be as sick as you say you are. You look normal and you’re still smiling!” it made me question if I was making it up. I was actually relieved when something like stomach pain would wake me up in the night because it felt like evidence that it wasn’t in my head.

Given the mental battle, the diagnosis of gastroparesis was restorative. Though it didn’t change my eating situation (gastroparesis doesn’t have a cure), I had a label. I knew what was going on and I knew it wasn’t in my head. This diagnosis also led to more discoveries:

  • Gastroparesis is one symptom of a broader underlying genetic disease I have called dysautonomia, where the autonomic nervous system doesn’t fire quite right. (Your automatic nervous system is in charge of all of your automatic functions like breathing, heart rate, and digestion.)

  • I also have post-orthostatic tachycardia syndrome (POTS). Your heart rate and blood pressure normally work in a beautiful harmony with each other to keep your blood flowing at a normal pace. In people with POTS, that coordination is off, and our blood pressure doesn’t stay stable.

  • I’ve probably had these things my whole life.

These discoveries also helped me come to terms that this would be my new normal. I should clarify that “new normal” doesn’t mean content. I was still itching to keep improving and pushing the limit to get back to a “real normal.” But it does mean that I refocused on figuring out how to optimize my life in its current state. I worked with doctors to find medications that helped the gastric emptying; and my champion husband helped me figure out what I could consume and how I could start being active again. I still had my fair share of bad days, but they didn’t knock me down like they did before. With the support of my family and friends, I could keep getting back up.

My steady state for the next 3 years involved consuming ~1,000 calories a day, 98% of it liquid, and just doing life again. (P.S. if you need any ideas or comments on protein shakes, I’ve tested most of them! 😄My current go to’s are Huel and Muscle Milk!)

Then, about a year ago, my life changed for the better. My husband stumbled across a surgery offered by Cleveland Clinic and I was a candidate. I didn’t know what would happen, but I hoped for the best and knew I had an army of people praying for me. I had the surgery on 3/12/19, spent a few months recovering, and then saw improvement. My energy started returning and so did my ability to consume solid food.

As I write this today, I’m still not “normal.” I still rely heavily on a liquid diet and I still have bad days. But now I’m able to consume 1-1.5 solid food meals a day and it’s glorious. It means my husband and I are now eating dinner together for the first time since we got married 4.5 years ago. And hanging out with friends doesn’t require a weird dance of why I’m not eating if people aren’t already up-to-speed.

It’s not ideal, but it is OK! I’m not sure if I’ll every look back on those years and think, “Golly, I’m so thankful I went through that!” But I can see the silver linings. Here are a handful of them:

  1. This is something I’ve had my entire life. That doesn’t depress me. It reminds me that I’ve done life with it, swam the English Channel with it, and I can keep going.

  2. Open water swimmers have complained about missing solid food or suffering from nausea during long swims. Lucky for me, I have plenty of experience in both! 😄

  3. My mental stamina has been sharpened; my spirit and willpower aren’t afraid of a fight.

  4. I can take advantage of the now! I realize my health is fragile and it could decline again. But I’ve got some of it back now so I’m going to do something with it! Carpe Diem!

As I head into Week 2 of quarantine, a lot of uncertainty remains. Swimming has been the best way to keep my digestion more regular, so I’m really focused on staying active and keeping tabs on my health while I don’t have the opportunity to swim. Things could always change, but I’m not giving up on this swim. My spirit is still kicking, I’m figuring out a routine, and I’m choosing to stay positive and smile. It doesn’t mean everything is peachy, but I’m doing the best I can 😊.

Stay safe and healthy out there, everyone!! We can do this! Hands in -- QuaranTEAM on the 3!

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Wow. Thank you for sharing your story and for giving the perspective of what it has been like to develop the mental stamina within the last couple of years. I miss you friend!

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