This weekend I stayed on my couch, watching movies, with my humidifier over my nose and mouth in order to keep from getting mucus plugs. I still sound funny breathing. I’m annoyed by it and I am positive that those who are around me are annoyed and uncomfortable with the noises I make. I rested. I tempted to walk down to the lobby for a bit of internet time. Thankfully, a neighbor got my wheelchair and wheeled me back to my apartment. I also realize that I hate chaos in my life. My living room looks like a tornado came crashing through and I feel guilty because I cannot do anything to change it. I’m thankful my caregiver and nephew will be here to help me clean up. Nicholas has been a trouper. He has been extra affectionate with me. Watching me like he is on guard and always checking on me. I wish humans could be as thoughtful and considerate as animals. Not afraid to show love and kindness and affection during scary and difficult times. I love that God created these creatures to aide in healing. I’m thankful for my Nicholas.
Friday I was released from the hospital, but it seriously turned into a stressful journey. Since I had a bronchoscopy and a larnyxscopy done my throat and neck hurt badly. I can’t take pain meds such as oxycodone or Vicodin because it compromises my air quality too badly. So I am on mega dosages of ibuprofen. I made this decision myself, because I noticed that when I took a couple of pain meds my oxygen levels went to 90. I didn’t like that. The amazing thing is it didn’t do that when I took the Ibuprofen. The ibuprofen doesn’t get rid of the pain, but it makes it tolerable. I am bored out of my gourd, but I have found solace in my laptop, writing, reading my bible devotions (I am almost done with Ezekiel), Nicholas my beloved cat, and the comfort of comfortable pajamas. Just to put this out there. I could use some new pajamas in my life. I want cute and comfy ones. I’m also listening to uplifting music of For King and Country, Toby Mac, U2, and Annie Lennox. I also finished reading Joyce Meyer’s book “The Mind Connection. This couldn’t have come at a better time. I’m in the process of writing a review for Jamie Chases Butterflies. It’s been a tough weekend. A lot of emotional things started coming up for me. Here are some examples of my thoughts…
Thought 1: To me it is embarrassing to realize that the emergency RN’s, Ambulance workers, and firemen know me well. Not only them, but also the Anthesiologists in town. When they see me coming I have the mark of being a complicated case. It isn’t my attitude that bothers them. It is the scary challenges steaming from my throat issues and breathing. I’m well know because of my complicated airway. I have been different my entire life. I see things differently. I am stubborn and bullheaded. I didn’t care that I was different. I was just me. But that is because I knew others in my life who were just as stubborn and bullheaded as I am. My airway is different. I know no one else with the complicated airway that I have. Even those with the diagnosis of Wegener’s doesn’t have my complicated airway history. I do have some amazing people in my life who are working on the understanding of it all, because they have asthma issues. Mine doesn’t affect lungs. Albuterol makes my breathing worse. It’s hard to fathom what I am trying to explain about my breathing and airway. I get exhausted trying to explain things. I know I am loved and valued and that isn’t my feeling. I wish that my airway could be cured with simple exercises and albuterol, but it can’t. Working on these feelings and what I can and should do about it will be a part of my healing journey. My emotions regarding this aren’t even all in yet. I’m still processing so please forgive me if I come across as angry or that I am not listening or pooing pooing your ideas. In many causes, your ideas I have tried. It did nothing. In a lot of causes, such as albuterol it made my breathing worse.
Thought 2:
This time they used a 5.5 tube instead of a 4.5. That is an improvement. My voice box was moving faster and better than it has before. Dr. Anderson wants me to see a speech therapist. Dr. Anderson went 1 CM past my voice box to stretch it out without hurting my voice box. My surgery didn’t have any complications. It was after surgery and after I got home I started having some cluster fucks. There is no better word than cluster fuck, so I apologize in advance for my language. What happened? Well, first I came home and two hours later I had a major mucus build up plug that I couldn’t just cough up. Because of my small trachea things do not just slide down like they do for a normal airway. Those giant pills, I generally have to cut in half in order to swallow them and I get mucus plugs that I just keep coughing up. I ended up having to go to the ER. Then I got home from the ER and my oximeter stops working. It doesn’t register that my finger is inside of it to measure my pulse and oxygen levels. That means I have to spend some money on a new one next month. Extra money I do not have for things. An oxi-meter is a necessary thing for me to own. It isn’t that expensive really, between 5 bucks and 10, but it mid as well be a millions dollars. So now I have to live without one until October when I can finally purchase one. Thankfully, my peak flow still works and so I’m not totally screwed. Thankfully, my nephew and caregiver is going to attempt to see what he can do to fix my pulse ox. He is familiar with them because he works with them out on the field. He is a med tech for the National Guard in the Army. I simply had a frustrating day. And when you are still drugged up and having a hard time functioning. It seems that everything that happens in life just made me worse. I wish I could be my normal self during crises and just flow with it like God tells us to. This weekend I couldn’t. That causes me to doubt myself. Another huge can of worms.
Thought 3:
My heart is also full of thankfulness at the same time. I’m thankful that I do have a huge network of supportive people in my life. I’m thankful that I can breathe even if at times it is a huge challenge. I can be trach free. I can smell. I can wash my hair without having to worry about my stoma getting full of water and going into my lungs. It’s freedom. I’m thankful that I do have options. That I have great insurance. That I have the ability to get Netflix and watch movies. That I have an antenna so that I can watch TV especially during the nights when I cannot fall asleep because I have to take mega dosages of prednisone at the moment. I’m even thankful that there are harsh medications that I can take to help me fight my own body. I’m thankful most of all that I have opportunities to rest when I need to. I don’t have to feel guilty. I don’t have to feel slothful. I don’t have to pretend that I am alright when I’m clearly not. I have the freedom to express my fears, frustrations, and do it in a healthy, motivating way that inspires me to keep on fighting. God made me that way. He created me to become a strong woman with a huge heart that craves and wants to be the proof of his love for us all. I’ve been listening to this For King and Country song called “The Proof of your Love”. Listen to what it is saying. Take the lyrics deeply into your heart and fathom what they truly mean. No matter how much we know in our hearts and soul about God and his power. We are bankrupt without love. We really are. I know that I am not bankrupt. I am loved. That gives me the strength and peace to keep on moving on.
I went through a lot of emotional rollercoaster riding while writing this post. I erased and rewrote a lot while writing. At times like these I am an emotional child especially when the Cluster F’s of life just happen with no rhyme or reason. Turns out Jesse was not able to fix my pulse ox meter. That means I have to get a new one. The sensor in it stopped working. I bid it farewell and thank this tool for its service for the last 4 years and put it in the garbage can. I’m thankful I still have the peak flow until I can get another pulse ox. On Ebay, you can purchase one for one dollar and no shipping costs. I hope to have a new pulse ox soon. I’m also thankful that when I did my peak flow readings throughout the day I am now hitting 230 instead of 150-200. That is an improvement. Of course, I’m charting the progress to the great joy of Dr. Anderson and for myself. I’m becoming quite the charter in my life. I sometimes find it a bit overwhelming. It is a necessity of my life and I am learning to enjoy the process of my self-care. I am no longer one who can live by the cuff of her pants and not be aware of my surroundings or how I am in this world. It’s a strange feeling. I wonder how old people generally are when they start realizing that the world doesn’t revolve around them and that taking care of yourself isn’t necessary about you, but about the people who are in your life. Just one more thought of many… Enjoy your week guys… What are your thoughts?
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