While I am writing this post I am listening to Hillsong United album Empires. My favorites are Prince of Peace and Even When It Hurts. That is the soundtrack of this post.
The last two months have been rough for me. I learned a lot about disappointment, rejection, shame, and anger. Disappointment because I was not eligible for the resectioning surgery because the affected area was too long. That was hard to hear. I felt let down by God and by my medical team and myself. I also felt rejected because the hospital I usually go to when I have emergencies and my trachea surgeries. Without talking to my primary ENT they shipped me off to the OHSU in Portland Oregon. Where I was not heard, I was not respected, and I definitely knew more about the T-tube stent and how I reacted to it than they did. I had one a few years ago and it did not work for me. Still Dr. Flint said basically he knew more and he knew how to do it better than the doctors at UW. Well, guess who was right? Me. I had to rip the stent out myself because I got a huge mucus plug and so know I am living with my Jaxston 5 again. They should have just put the Jaxston 5 in, so that I didn’t have to go spend another couple of weeks in the hospital healing from yet another surgery.
Right now, I am stronger. The trauma of surgery has passed. I am not on pain medication. The chemical burn I got on my face while in the hospital has healed. The best part is I don’t have to suction so much and my mucus production has slowed down. This makes me happy.
I am learning a new way of being, so I feel a bit off kilter as I walk down this new chapter in my life. There are some things that have not changed and I am going to focus on this.
- I can still read. When I got the chemical burn around my eyes and face I had blurry vision. I thought oh no I am not going to be able to read my books. Holding a book in my hands and have the words jump off the page is one of the things that I enjoy.
- I can still eat well and drink water to keep my body well. Wellness is important to me and I can still do the small things that I need to do to be at my best. I might have to add some small things, like eating more probiotic foods or up my water intake but I can do this at my own pace.
- Transitioning is hard. The best thing I can say about it is that you just put one foot in front of the other and keep moving forward as you learn to accept the changes. It sucks sometimes. It hurts sometimes.