Where Do I Go From Here?

     What do you do when you get released from the hospital after seven days of being under the constant care of medical professionals? Where when your throat starts closing and you can no longer get air into your lungs the life saving medication and quick response is only a push of a button away. And when you close your eyes to go to sleep you know someone will be coming into check on you in a few hours to make sure you're still breathing. It's hard going back to a normal life. It's hard trusting yourself. I don't trust myself. I don't trust my body. Last night was my first night out of the hospital and I woke up twice unable to breathe, throat swelling, gasping for air and I had to deal with it all on my own. I had to mix the saline and the medication into my nebulizer and remind myself that I was okay. That it would be okay in a few minutes. I don't have access to IV benadryl so I have to wait until my throat opens back up to be able to swallow benadryl. It takes longer to get better at home. It takes more willpower to tell myself this to will pass.
     My team came in to my room before I was discharged to go over the home plan. They wanted to make sure all of my questions were answered before they gave the final sign off for me to go home. The lung doctor, respiratory therapist, my nurse that day, and the discharge planner all came in to make sure we were all on the same page. And to be honest we questioned if it was time for me to go home. I was still having life threatening reactions about every six to eight hours. The only difference is they were now being controlled by a nebulized medication and not an epinephrine shot. We questioned if maybe a few more days under constant monitoring would be beneficial. But I wanted to go home. I had spent seven days in the hospital and I just wanted to be in my own bed; so we decided to move forth with discharge. I have to set an alarm every six hours to give myself my steroid medication, you know the one that keeps my lungs open, yeah. That's a lot of pressure. Keeping myself alive is a lot of pressure.
     So what do I do from here? How do I go back to life as I know it? One tiny inch at a time. I'm staying close to home or at least people that know how to help me. I'm taking breaks when I need them and reminding myself it's okay to not be okay. I'm still having lots of reactions. I've had four since I got home yesterday. I'm staying on top of my meds and making sure I'm always near benadryl and trying to get a head of reactions when I can. I have a doctor appointment next week to discuss next steps.. I don't know where we'll go from here. I feel like I've hit rock bottom as far as health goes and I will take anything. Hopefully the labs that were drawn in the hospital will yield some answers and I will be able to get my life back on track. But for now... I'll keep on going. One step at a time... little by little.
"May the God of hope fill you with all the joy and peace as you trust in him, so that you may overflow with the hope by the power of the Holy Spirit." - Romans 15:13

With Love,
Elizabeth <3