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With Oxygen on Their Back

For those on oxygen who have a story to tell. Who have kept fighting, never given up, and are stronger then they ever thought possible.

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“Guilt with chronic illness isn’t always not being able to but sometimes it’s being able to.” Lately, I have scrolled through my Instagram feed with heavy heart. Seeing some of you struggle to breathe. Literally to eat. And knowing that there is nothing I can do to help. Wishing that I could wave a magic wand to fix it. But yet also knowing that you wouldn’t want the pity but the encouragement. But seeing others struggle can be hard. Especially when you are as stable as you can be at the moment. Guilt can find you in that. As you eat your favorite foods. As you take a deep breath. It’s the “are you really sick?” Or “should you even complain?” guilt that sets inside of you. Guilt that shouldn’t really be there. Because honestly, while are conditions are different, we are still fighting this war together in some way or another. And through this war, I have learned that health can change at the drop of a hat. It’s learning to be grateful, not guilty, for what your body and you can do. Grateful for each breath, each bite of food, and every loved one. Because you never know when it could be gone. This post is thoughts from my heart so please accept it as that. And to each of my followings and followers, I love watching you conquer life every day. Keep on fighting my warriors. ❤️💪🏻 #begrateful #guilt #truth #writtenfromtheheart #alwayskeepfighting #sickfightsback #fightlikeawarrior #youarestrong #chronicillness @fightlikeawarrior

New Vlog Is Up! Link in Bio Mayo Clinic came into my life 10 years ago and we have gone 5 times since then. Mayo is such an amazing place, not only their doctors, but the cool underground tunnels of hotels and shops. And the beauty of it makes you feel like you are at a fancy hotel not the doctor office. I’m so thankful for Mayo and for the amazing care they give to each and every patient. I’m also thankful that my parents make this drive for me and turn it into a fun adventure, like going to the Mall of America! I’m excited to share this past Mayo experience with all of you. (Link in Bio for full video) I hope you enjoy, especially the cool hotel at the mall! 🎢🏥 #mayoclinic @mayoclinic @mallofamerica #mallofamerica #summerfun #vlog #video #youtube #chronicillness #oxygen #makethemostofit #minnesota #family

As August opens its door and Summer comes to a close, I’m reminded of how wonderful this summer was. A far cry from last summer which was filled with stress, tears, fears, and anxiety. This summer was filled with warmth, sunsets, beaches, and Minnesota. While my health wasn’t perfect and I pushed through more then I probably should have, I’m thankful I did. Because these are moments that I will never get back. This summer was beautiful and magical. I wish I was back in many of these moments but I’m thankful that they will live forever in my heart. And stay tuned tomorrow for a new Vlog on my trip to Mayo Clinic and Mall of America. #summertime #beach #hawaii #thankful #chronicillness #vlog #oxygen #memories #moments

PLE, Protein Losing Enteropathy. A disease that is caused by my Fontan for no reason. It’s the hardest thing to get into remission but somehow after 10 years, it happened. When I was first diagnosed, my protein level was .08 (normal 3.5-5.0). A Fellow, who is a step from a doctor, found it. I was extremely swollen, exhausted, and having extreme diarrhea. None of us had ever heard of PLE and had no idea how to treat it. I took Peptamin, shots, and even had an infusion. But it was short lived. During this time my mom found Mayo Clinic. As we walked into Mayo, hope filled us. My GI doctor there helped get me on a correct medication(one I’m still on) and told me to have a low fat diet. This was life changing. But it wasn’t always enough. My protein level became a rollercoaster. No matter what I did. Last year, my Cardiologists at Vanderbilt decided to take a chance on a new medication. It hadn’t really been done but we were looking at a heart transplant and had nothing to lose. Fast forward to now and I’m in remission!! My stool shows the min amount of protein lost and my albumin level is 4.5! 🙌🏻 It took 10 years. 10 years of fighting and trial and error. And now I have a research study done on me! Case #1 ➡️ swipe to see (link in bio). These last 10 years have been wild but if this helps one person, I’m grateful for it. I’m forever grateful for my doctors who fought and never gave up. Thank you from the bottom of my heart for changing my life. Praising God for putting the right doctors in my life. Never give up on finding a treatment. Just keep on fighting my warriors. #grateful #remission #proteinlosingenteropathy

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Learn About How I Breathe

I Am Constantly Fighting December 1, 2017
I Am Courageous September 29, 2017
I Am Invented September 27, 2017
I Am An Overcomer September 25, 2017

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