Did 2020 happen? In many ways I feel like 2020 was a lost year. So many people had plans cancelled or pushed or changed. No matter what the case was, 2020 was a strange year.
For my family, it was filled with a roller coaster of uncertainty and emotions.
For my Dad, it was filled with withering away, a few hip replacement surgeries, and most recently, a few spinal surgeries. Yes, more than one. Not to mention the blood work, pre-surgery COVID tests (good thing he has big nostrils), colonoscopies, and EGDs. The man has done it all. If you are not caught up on the reason for all these things, make sure to check out the first two posts (part 1 and part 2).
Despite going through all the world went through, and then going through his own medical issues, he still was one of the happiest people around. Not everyday has been good. In fact, most days are very hard, but he still tries his best to be a Dad.
If we have learned anything collectively as a family in the last two years since his original diagnosis, it is that we are all stronger together than apart. We have all done our part to support him physically, emotionally, and spiritually as needed.
But things weren’t looking good. In fact, they still are far from great. His second spinal surgery sent him into a spiral of pain and discomfort. So much so, that it made living not fun. Imagine waking up one day with deep chronic pain in your back that won’t ever stop, and affects every other aspect of life. Oh, and you can’t eat much because your body is in such discomfort from the surgery and the fact that the celiac disease was diagnosed so late, that your stomach is not absorbing the food you eat. Every bite of food just makes you nauseous. But you have to eat or you die. This is his every day.
All of these non celiac disease medical issues were created because for years, his body stopped absorbing nutrients. The celiac disease went undetected in his body until it was so far gone, he was falling apart. Why is this important? Because right now, this can happen to anyone. Without proper funding from the government, celiac disease can go undiagnosed or misdiagnosed for years. Sometimes, a patient is young enough and their body can heal. Other times, they are not so lucky.
Celiac disease is also found to be hereditary on some level, and I am lucky enough (sarcasm) to have the two genes needed to get celiac disease. Yay me! What does this mean? Well for now, it means nothing. For now it means I am lucky enough to KNOW about celiac disease, the symptoms, and how to handle it.
One of the best things we have all found out in this process is that there are more and more gluten free food options in the market, and many taste just as good or better than their counterpart. We have spent majority of the past year eating GF, and it has been pretty good. Not perfect, as my favorite pizza and burger have gluten, but as I currently don’t have CD, I am clear to enjoy them for now. There are even gluten free beers that are beginning to taste better and better!
SGN
Now I don’t want to end the update without Some Good News.
I was able to postpone my NYC Marathon to 2022, which works out because my 2021 race calendar got filled with a few important races (Ironman World Championship in Kona).
More importantly than that however, is that Dad has started a new protocol of Total Parenteral Nutrition (TPN). Basically his heart is connected to an I.V. bag 24/7. While that sounds like a drag, the bag actually is filled with all the macronutrients and vitamins and minerals he needs, directly into his bloodstream! So he is finally getting nourished!
In the first few days since he started the TPN, he already sounded like a new man. I can’t tell you how happy that made me. Just the tone in his voice was so much better than a week before when he felt like he was circling the drain.
The process is a bit scary because there are a lot of things that can go wrong and don’t end well, but if things go well, this could be the first step toward the long long road to recovery. Science is amazing.
We can’t thank his doctors enough for continually searching for ways to heal him, even if the process is longer than we want. With all the additional stuff the medical staff have had to go through with COVID, they have been true heroes in keeping him alive, and possibly on the right side of this mess.
If you want to support the Celiac Disease Foundation, please donate to the team. I might not be running my race in 2020 or 2021, but I will forever support the cause behind this disease. Let me know in the comments if you have any questions!
