So where I last left you, admittance to the hospital. Sunday and Monday were pretty vague. Blood work, numerous doctors, poking and feeling, pain meds and call buttons. I was allowed to eat and when I eat it makes the pain worse. I woke up Sunday to a breakfast of toast, eggs and grits. I don’t think so. I stuck with the toast. Lunch wasn’t much better. I had jello, mashed potatoes and a roll. Are we noticing a pattern or a lack of food variety? Get this, they brought me pork for dinner and yes I was on a Gastroparesis diet. I was shocked. I haven’t consumed anything of that consistency or nature in two years and you want me to eat that now. I had mashed potatoes and a roll.
Sunday the nurse came in with a shot… it had a needle. IVs do not need needles. It was a heparin shot. I remember people getting them at the pharmacy. Gosh do those things hurt and bruise. I have five bruises across my stomach in a line for proof. However at night, I took Ambien and Dilaudid to help with the pain and sleep. When I took those, I never felt or knew I had the heparin shots. I woke up one day and looked at my stomach and noticed the bruise. I asked Jacob if I got a shot during the night and he said yeah, they came in four times. I never knew.
Jacob was wonderful. He stayed with me every night except the first. As I mentioned before, I would not let him. I am the stubborn one in our relationship. He has accepted with my diagnosis with such grace. He has patience with me. Since my diagnosis, I have learned at lot about life planning and patience. I have a lot to learn though.
Monday evening the GI doctors decided to do an endoscopy to make sure that everything internally was okay. On Tuesday everything checked out. The pain was still there. The doctor overseeing my case came in to talk to me later that afternoon. We talked about my GP and how life had become more complicated at work with eating. After discussing several things, he asked me if I had ever considered taking a medical leave from work or having a temporary feeding tube. When that registered in my head, everything stopped. Nothing else in the world mattered to me at that moment, which is selfish I know. He decided to discharge me and let me follow up with my GI doctor the next day. While being discharged, the PA from the GI department came by. We talked and she felt around and found a tender spot. She said that she would talk to my doctor about it and he’d give me a call.
Wednesday, I didn’t leave my cell phone out of ear’s range. I always lose my cell phone. He finally called. We started at the beginning and went through everything. He told me my CT image was not good. He asked me when I ate on Saturday. I told him I ate lunch around twelve or one. Well, the CT was performed around nine or ten that night and my stomach still had a good portion of food in it. Not good! He told me my stomach was bad. It was as plain as that. He asked about my diet and weight. After discussing it, I told him that my hospital doctor mentioned a feeding tube. He told me yes. He said that at my weight, if I cannot get enough calories to sustain the weight of 100lbs or above, I would be getting a feeding tube. I was numb. It was true. He told me that I should not be afraid of them; they are only temporary, six months to a year.
The whole feeding tube ‘issue’ has left me feeling overwhelmed and numb. I know that most likely I’m getting one. I’ve dropped ten pounds in four months. I only have five pounds to go and I have been fighting to keep this weight. Another liquid diet could drop those five pounds.
I’ve been out of work for six and a half work days. Somehow I got put on medical leave. My employer will evaluate my doctor’s notes about my condition and decide if I can work until I have a flare up and then take several days of my medical leave. I don’t want to sit at home for three months and then get back to work and have more GP issues. I have discussed this with my doctor and he told me that it was up to me for when I think I need to take a medical leave. I planned on going to work Monday. When I mentioned this to HR, they told me I could not work until my doctor said that I was capable. Well I called his office freaking out, it was Friday afternoon and he is going to be out of town next week. I want to work people! The doctor’s office asked why I was going back to work. Ummm….. To wrap this up, they are allowing me to work two hours a day. That is what I am capable of at the current time.
I feel so overwhelmed. I knew that most likely one day I would be faced with taking a medical leave and maybe a feeding tube but I doubted that one, it bothers me. I am twenty-three. I am having trouble processing all of this. Do I do this, what will happen if I do this, it goes on and on? I want to get married in the next one to two years. I told Jacob, how you think it will look with a feeding tube or port under my wedding dress. I never in my wildest dreams thought I would be dealing with this at my age. You can’t plan life.
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