Warning: This is going to be a dark post. I am going to share a lot of disturbing and painful things in this post and it may trigger some. If you are easily triggered I won’t be offended if you don’t read this.

I am having a hard time sleeping tonight. I have a ton of things on my mind. I am sitting comfortably on my bed with Nicholas beside me, sleeping. Since I came home from the hospital he has to be near me. I am loving the extra affection coming from him. I have my diffuser working with my essential oils billowing in the air that help me with breathing and relaxation. The last couple of months have been draining for me. It started when my large volume nebulizer machine I use to keep my trach tube and trachea moist so that I can cough out the mucus plugs out easily stopped working. It was the fuse. I have been fighting my medical supply company and insurance in order to either get my old one fixed or a new one. They did not want to pay for a new one since I just got one two years ago. I am allowed a new one every five years. Waiting is the name of the game when it comes to insurance and medical care. I have learned this over the years as I traversed through my journey with chronic illness. This time, I ended up in the hospital for a week because of this incident. I woke up Monday morning feeling like a bulldozer ran me over. I could not catch my breathe. I kept squirting water and suctioning without getting any results. I did this 30 times since waking up. My lungs seized up and I was not able to breathe well and my heart rate raced. I was scared. My caregiver was scared so I had her call 911 for me. Of course, the ambulance came and the first thing they think is that I have Covid-19. The first thing they think when you go to the hospital is that you have covid-19. I knew I did not have it. I did not mind them testing me, however I did mind them treating me like I was not a human being. I was kept in isolation for 24 hours while they waited for my test results. Everyone came in wearing hazmat suits and it was scary. I felt like I was in the Stephen King movie The Stand. Thankfully that only lasted 24 hours. I cannot imagine the fear of dying with everyone around you in hazmat suits and you are in isolation. No one is allowed to visit you or hold your hand. You feel completely alone. You feel like a piece of crap because everyone is afraid to be around you. I do not see the compassion in the situation. I see the fear and I do understand the fear but we forget there are real human beings who are sick and are dying and are seriously ill that need the human compassion element the healing experience. That is what I am thinking about. What I want my legacy to be, what I want people in my life to know about me, what I am about. It is hard for me to share. Especially when it is ugly. It is easier to bury it in a box deep inside and hope it dies an ugly death. That does not happen, instead, it festers until eventually it comes out. This journey to the hospital freaked me out. I experienced emotions I have not felt in a long time. I felt alone. I felt fear. While in the hospital it was discovered that I have two bacterial infections and I needed antibiotics. I am exhausted and am struggling with the emotions with all of this new stuff.

Here are some key things I have learned:

• I have amazing family and friends who are supportive, kind, and are quick to aide me when I ask. I love them and I am thankful for them.
• I love my cat, Nicholas. I am enjoying the bond we have and he brings comfort to me.
• I am scared. I am scared of my two bacterial infections that I have in my lungs. I am scared of suffocating to death. Suffocating is a terrible way to die. Yes, I am thinking about dying.
• I need to maintain my machines better both my oxygenator and large volume nebulizer compressor. I am making inquiries on how to do this and what it will cost me.
• My new medication: Benzonatate is helping me a lot. I love not coughing all the time and spitting like a llama. Although, llama’s are cute I still would hate to have them spit at me.
• I need and thrive with calm surroundings. Drama is not my friend.
• Soft blankets, tea, and Christmas movies seems to be my thing right now.

Until next time, breathe deep and enjoy the smells of November.