Continuing my story

I have't written in a while and it is not from a lack of want or thought about it. In fact I have spent many hours thinking about how I should start this update or if I should call it an update or maybe I should just write a little or maybe a lot. Maybe keep it pretty impersonal or dive to deep into the personal. And for those of you who have read my blog in the past, you know I'm pretty good about sharing the personal things in my life and I tend to write longer posts. Unfortunately for those of you hoping for a shorter post, this probably isn't going to be it. I have been quiet for too long. 

463 days ago, our little family left our Columbus family to start a new phase in our lives. We had lived in Columbus for 4 years. The longest we had lived anywhere as a married couple and the friends we made there will be a part of our lives forever. They, along with our extended family and friends, saw our family through some of the toughest years of our lives. Sean was working on his PHD, we welcomed Kassia into our family, all the while I battled one GI issue after another. 

76 days before we moved, I underwent surgery to help me to not throw up anymore. It was a Pyloroplasty, which I think that was the last time I really blogged about my health. The surgery was successful. Although I still was occasionally throwing up, it was mostly when I over ate. That was manageable. I could keep liquids down! For those of you who know, that was a big deal. The healing process from that surgery was slow and painful but by the time we moved, I was feeling much better. I had energy again and I was amazed by how being fueled by real food could make such a difference. 

When I left Columbus, I left my dear friends thinking that I had turned a corner, that we had finally found a fix. I was heading into our new life with a clean slate. Yes I would still have to follow up with dr's but it wasn't going to be a mainstay in my life. We would meet new friends and people in Wisconsin who didn't have to know my health history because I was wearing it on my face or because I was constantly in and out of the hospital. I want to preface, I was never made to feel like a project or a burden to those in Columbus who helped me and my family. They cared for me because of me and not because of my sickness.

 Most of what I am about to talk about has to do with the demons that I personally deal with. The perspective of the person I am and how I feel that people may perceive me because of something out of my control. I didn't choose to allow my body to not work properly, I feel like it is a byproduct of being human. Our bodies sometimes work great for 90+ years, sometimes they never work from birth and other times they work great for years and then something, something random, starts to affect them in a way no one saw coming. 

For me I was the latter. I was so active and really if I wanted to do something physically, I would work till I could. I had energy for miles and I guess I needed to learn some tough life lessons. I though that having infertility was the toughest lesson/trial would have to face in life. At times it was soul crushing! But this life had other plans for me because after having Maia, life hit me hard. Then a huge miracle happened. I was pregnant again and Kassia was born 9 months later. Then the next hardest thing in my life happened. What started as an acute illness turned chronic. 

I want to justify my history with my history and dialogue about everything that I have been through, seen and learned but there is too much. It is enough to say that I feel like I have been climbing over some of the toughest trails, fallen off a couple cliffs but because I was not alone, Because of my faith, Sean, wonderful family, friends and my two beautiful girls, I have been able to keep going. I have had the right medical practitioners come into my journey that have helped me stay here as well both mentally and physically. I think of all that has been done and my heart is overwhelmed because I get to continue to live my life, albeit not how I imagined it, but I get to live it, with my husband and two miracle children. 

When we moved to Wisconsin I thought that I had closed the book on my most pressing health concerns, I thought I could write a new story. What I failed to realize is that my story is a part of me and it has come back to remind me that. My health story will come in chapters, mixed with other chapters that will intertwine with each other to make up the book of my life.

176 days ago I was diagnosed with Gastroparesis. Which means that my stomach doesn't empty the food that goes into it in the normal amount of time. So when I eat things back up and it causes me to throw up.  

793 days I had my last feeding tube removed. It was the day I swore I would never have another J tube (jejunal Feeding tube) placed in my abdomen again. 

9 hours ago I had a feeding tube (NJ) placed through my nose, into my stomach and passed into the jejunum to help me regain some of the weight I have lost due to the Gastroparesis. It is hard having a tube hanging out of your nose. It doesn't look right. Honestly it doesn't feel right. Having something down your throat 24/7 isn't super comfortable. I hated the last one I had 4 years ago. This one I'm hoping will be very temporary, just something to help get me through then next few weeks. Help me get my energy back up. 

Having this tube on my face digs up a lot of emotions and insecurities, because it opens a new world where I get to explain to every person what is going on, what is on my face and if I'm going to be okay. I really don't mind answering those questions, especially on my own terms. I enjoy educating people about various health matters. I just don't like feeling forced to do so. This tube however forces my hand. 

I know I make this a lot about me, but I understand the impact this will have on my children. Maia was 4 the last time I had a feeding tube and Kassia was 2. They don't remember it. But their classmates will ask them what is wrong with their mommy, as this appears different. We have hopefully taught them well enough that different isn't bad but I know this is going to be a growing experience for all of us. At the end of the day though, I know I am surrounded by good people. I have a wonderful family, girls who tell me I got the tube because I am hangry and tired and because I throw up so much. Luckily we can find the humor in it all and they look at me the way only a child can look at their mother. They love me and I'm so grateful that there are so many wonderful inventions to keep me alive.