This last year has been one of the most challenging years of my life. But with all obstacles, there is also a satisfaction I made it.
Here are a few highlights:
In January, my infectious disease doctor and I agreed I should get a port-a-cath. A port is a device implanted in your chest and is threaded into a large vein which allows a person to have permanent IV access. With this device, I could get IV antibiotics at home without needing to go to the hospital and have an IV line (PICC line) placed. (Due to having a ventilator and tracheostomy, I have frequent lung infections which often require IV antibiotics.)
There are some decisions I wish I could got back in time and change. This is one of them. I have a genetic condition which affects my connective tissue, specifically it affects my joints and blood vessels. With Ehlers Danlos Syndrome, my blood vessels are prone to collapse anytime I am stuck with a needle. The thought never crossed my mind that getting a port could also cause negative consequences.
As soon as the port was placed, I was in a tremendous amount of pain. My heart was racing; my limbs were shaking uncontrollably. I thought I was going to die from the pain. I was sent home and told to take Tylenol. (What I did not know at the time was the vein in which the catheter was placed had collapsed. This prevented blood from the left side of my head and neck to be able to return to my heart.)
Over the next days and weeks the pain grew worse and worse. I had an incredible amount of pressure on the left side of my head and neck. It felt as though my head was going to explode!
The upside to this all is it helped alleviate a fear I have had. In 2010, after I had returned from the magical clinic in Minnesota and was told there was nothing they could do for me, I wanted to commit suicide. God intervened before anything ever happened, but I have always been afraid if I was in that much pain and distress again in the future, would I take my own life? Thankfully, I now know the answer is no. During the 42 days of being in intense agony, I clung to God and kept asking for His help. This situation helped me realize how far I have come since 2010. For that, I am tremendously grateful.
In March, I had the port removed. It took several weeks for the pain and all my symptoms to go away. During this time, my beloved pulmonologist dropped me as a patient. That event completely shattered me emotionally.
In April, my mom began watching endless YouTube videos due to the lock-downs. She told me I should have my own channel. I have for a long time wanted to start a YouTube channel, but I am not very technology savvy. After being very sick this winter/spring and then being emotionally drained from my pulmonologist dropping me as a patient, I was at an all-time low. I figured I would shoot a YouTube video and if it failed, it would not make a difference because I really could not be any lower than what I was. At the end of April, I filmed my first video. To my shock, it was a success! I kept shooting one YouTube video a week, and the channel has continued to grow and prosper.
My YouTube channel has forever changed my life. I have been connected with others who have ventilators and/or tracheostomies from all over the world. I am blessed to be able to help others and to share in our quest to live the best life we can.
YouTube has allowed me to do what I love—share medical information, tell stories, see the good in all situations and educate the world about some of the conditions I live with.
I invite you to check out my YouTube channel. Click here to view my YouTube channel.
The major lesson I learned from 2020 is sometimes you have to be completely shattered to the ground before you will risk starting a new endeavor. The process is painful, but in the end, shattered pieces can create a beautiful mosaic.
I hope everyone has a safe and blessed 2021!
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