My Letter to Gastroparesis
April 18, 2016
I think it is about time that I tell you my feelings. Other's know how I feel about you from me trying to explain you, but do you? Do you know the damage being on the disease that you do?
I was diagnosed with you about three years ago. It wasn't an easy road. I had test after test. And ER visits over and over before they found you finally through an emptying study. Even then my gastroenterologist couldn't explain you. You were suppose to be mild, but my symptoms weren't.
I tried eating multiple times a day for you to calm down a bit. I tried pureed foods, vegan, vegetarian, baby food, liquids only, not eating at all, the list goes on and on. But you refused to be tamed. I was put on medicine after medicine. Many of which were more concerning it seemed than the symptoms you already gave me.
My life changed. I started hating going to work. I didn't want to be perky. I didn't want to fake okay again and talk to therapists from around the would (PT/OT/SLP's) to help then find the perfect job. I was exhausted. I frequently would be alone in my office(as I was the only employee) vomiting after I ate. That became my life.
Your were winning. You were breaking me. I was scared, and I felt alone. No one knew why it was so bad. No one knew what to do to help besides pump more medicine into my system. I remember going out to my car and just bawling. Turning KLOVE up all the way and crying our to God on every single song.
Finally I realized there had to be more to life than this. Everyone telling me it shouldn't be that bad medically I decided that maybe my emotion from my job was making this worse. The fact that I had seen so many people quit or fired. I knew it was time to move on and I did.
Things slowly improved. My flares got farther apart. When they happened it was usually because of compaction which made sense because that affects everything in digestion too. So I figured I can handle this. It won't ever be normal, normal. But I knew what foods usually would make it worse. That was just life. The pain of getting backed up was normal. So I dealt with it. Another side affect of having horrible insurance and not wanting Dr. bills to get that bad again.
You tricked me. I thought you were essentially gone. I started working out, and eating healthier. Swearing I wouldn't let it come to that again. Then I October 2015 you reared your ugly head. Thank you by the way for starting right during the holiday season. I greatly appreciate it!
I was working two jobs at the time. A fulltime job that I had already been laid off of once and rehired and an amazing seasonal job at LUSH. LUSH was bringing me back to life. Showing me that people can be full of love an affection (mainly). I made new friends quickly and even though I was working 12-15 hour days between both jobs I knew I could deal. I knew I would get to LUSH and get to dance and smile and pretend I was okay for a little bit. And maybe for a little bit even trick myself that I was.
I knew you were back when I couldn't even keep liquids down for days at a time. When I felt like I had the flu when I didn't that never ended. I knew you were back but I didn't want to admit it. I left the job again that I wasn't happy at. Thinking that would solve things again.
I then got my dream job. I was so excited. A recruiter at Easter Seals! It is amazing to feel like you finally are good at something and fit in. I got compliments constantly for how amazing I was doing and my style. I felt good. Everything in life felt good. That's how I knew something had to be coming. Don't get me wrong I love being happy and content, but I know life is full of storms. I knew that at some point something had to happen. That being said I had to hope that it wouldn't be this. It couldn't be. I was wrong again.
You are back reeking havoc on my life. I lost that dream job I was just talking about. I lost being able to attend college right now to finish my degree. I have lost the ability to do the things I love and want to do. Even things I don't love like cleaning you make hard.
I have lost the ability to visit my Dad and Mom like I want to. Something I have always been faithful in.
You have made me angry. I hate you. I know hate is a strong word and something I don't usually use, but I do I hate you and am mad at you. I never know what to expect. The pain, hunger, nausea. The fact that most doctors and people don't take me seriously because you have made my "sickness" almost constant.
However in spite of all of this and the hatred I have to say thank you? I know what am I talking about? You have taught me how to fight, how to speak up for myself. You have made the relationship between me and my fiancé stronger than ever in spite of the pain. My friendships; stronger than just about any friendship. Because of you I have connected with some amazing new spoonies across the US. I can connect with believers like never before. It is one thing to have faith when you are fine, it's a whole different story when you have health battles.
I love that you have helped open my eyes to see how many are struggling. I know that I am never alone, and neither are they. Because of you I hope to be a comfort to others just diagnosed 0r struggling for years and not making connections.
I want you to know that I know this fight isn't over, but moreover that you won't win. I know you think you have some days. Those days I stay on the couch writhing in pain. I wonder if those days you give yourself a pat on the back. I want you to know I don't care. You may win a battle, but you will NOT Win the fight. Do you want to know how I know this? I am strong. I am a fighter! I am optimistic, and when I am not I have friends and family who are. And when I feel alone, I am not. God is here. He shows me this in every way imaginable.
Let me give you an example. I went to pick up yet another medicine and you know what I saw? A sparrow with a twig in its mouth. Clearly building a nest. To anyone else this means nothing, to me it reminds me of the verse I needed. Matthew 6:26 Look at the birds. They don't plant or harvest or store food in barns, for your heavenly Father feeds them. And aren't you far more valuable to him than they are?
My God loves me. You can take whatever you want from my life Gastroparesis, but guess what-you can never take that away from me!
Sincerely Your Human to Forever Torture,