Well, the answer is simple. My boyfriend is sick and tired of hearing about it. Ha-ha right?
But seriously, living with an autoimmune disease like Celiac disease is hard as hell! And yet, there was never a moment in my life where I thought I would be faced with it because I was never allergic to anything. When the words left my Doctor’s mouth, I truly couldn’t believe it. What about the pasta? Cookies? Cake? BROWNIES TOO?? But those were just the tip of the iceberg. They don’t tell you about the microscopic gluten that will sent your butt to toilet town for days upon days with nothing at all you can do to help or stop it. Or about how eating out will be a task in which you would rather cry and eat air then fight with one more server about how your food needs prepared. It’s taking the one thing you have to do to stay alive that you also reaaallly like to do and making it the hardest thing possible, eating food. So I decided to thrash out my anger towards this disease on the internet, hoping maybe there’s an audience out there who can relate.
I have always loved cooking, baking, and enjoying the diversity that lies within food. I have travelled to Belize, Ecuador and the Galapagos, Mexico, and I can tell you for a fact the food experiences that I had in those places just can’t compare to anything else. But do you think they would give a flying fluke about what gluten products are touching non-gluten products? Absolutely not. I ate llama and guinea pig while I was in Ecuador, no way in hell would they care about my autoimmune disease and the precautions I have to take for it. I’ve wanted to travel the world my whole life and now it feels like internationally I don’t have the options I need to not murder the lining of my small intestine. Which was my first very disheartening thought and realization.
Right after my doctor broke the news, I went home, opened all of my cabinets, and just started throwing everything with gluten into a big box. I donated the brand new bag of flour, crackers, more canned soup than I wanted to get rid of, and endless other snacks and ingredients to my local food pantry. Then came dividing up all of the opened goods to my family and coworkers so nothing went to waste. And during all of this I was so defeated already. I was two days in and it felt like everything was going down the drain. But it seemed like nothing could compare to the frustration that was the last 6 months fighting my doctors just to get to this diagnosis. But now here I lay 3 months later in the aftermath.
Right now after 3 months of being entirely gluten free and getting cross contaminated (microscopic gluten) by family on multiple occasions through the holidays, I still haven’t gotten better. I have been incredibly nauseous to a debilitating point since October 2019 and now February 2020 I am still in the same state. Tomorrow I have another doctors appointment that I am absolutely dreading due to fighting my doctors that I was, in fact, not pregnant for the last 6 months. I haven’t worked in months which is not like me. I was raised and have always been a very accountable person (if I can toot my own horn anyway) and now I can barely get out of bed and get anything done even around the house. Each day is a different battle. Some days there’s no way I can get out of bed without throwing up or having an unstoppable feeling that I will throw up. Then other days I have an hour at most where I feel just good enough to do the dishes or a load of laundry. Nothing makes you feel worse than when you don’t feel good enough to do anything and everyone around you is affected by it.
I think the biggest reason I want to start this blog is because I don’t know how to explain to the people around me the exact ways that I am struggling. I rarely ask for help because I hate being a burden or worrying someone for what to me, feels like not that big of a deal- even though I know it is. All of my family and people close to me want to help, but there is nothing to help this autoimmune disease. I have drank gallons upon gallons of water, cup after cup of tea to soothe my stomach, gluten free crackers galore because no food is appetizing, and every other remedy I have ever known to help soothe nausea and vomiting. I’ve tried medications for it too, and nothing helps. I hope maybe there’s something else may be wrong with me in the gastrointestinal region and that will explain why exactly I am still sick in bed. But to all of those around me who are frustrated with me and wonder what you can do to help- first, I’m sorry. Second, just talk to me. Treat me like the person I was before I got sick. I know I am at home isolated from the world, but I would love an actually genuine text or phone call seeing how I am doing, not physically but mentally, personally. Have real conversations with me, be honest and straight no matter if it might hurt my feelings. Just include me in your life like you normally would. I’ll do my best to be there in person as much as I can. And third, please please please be patient with me. I am doing my best. Truly I am doing everything I can to get back to normal. Finally though, I am okay. Everything else about me right now is okay, just not the nausea. After vomiting a lot the last few months, that has finally subsided with the gluten free diet. I am eating and making sure I am healthy so I do not want the over-concern or worry because it stresses me out! I can’t get better with all that worry.
So that’s my why. All of these struggles and frustrations that started over a year ago with joint pain has led up to a point where I honestly still don’t know what’s going on with me. But all my life I have been dealt some pretty crappy cards and each time I’ve won the round. My life is rich with the blessings I have put so carefully in my life. 2020 has already been really rough for everyone, but it is the year that life will finally deal the good cards. We are all in control of the things that happen in our life. Believe it or not, you are the God of your own reality. I believe that the only one that is in control of what happens to you, is you. I’m ready to take control of my own reality, and I think the world is too.
The Days in the Life of a Young Celiac 