Some good news! My recent urinalysis and blood work on my kidneys show that so far, they are in the clear. For now, it seems my GPA is showing up only in my nose, sinuses, trachea, and ears. My lungs, for the most part, also looked good.
Doctor P. scheduled a few biopsies to be done on Halloween to tell us more, but I am not looking forward to heading into the OR. Due to my tracheal stenosis, I can’t be “put under.” They will be using local anesthesia only. I will be awake the whole time. I have had a few surgeries, but I was never awake for any of them, thank goodness.
I’ve been told they can give me something to help me relax and calm my nerves, and I can tell you that I feel like I am going to need it. Hopefully, I will be able to get some sleep tonight. I am more of a night owl by nature, always have been. Going to bed early and waking up before the dawn is not natural for me.
It’s going to be a rough night.
20 minutes. That is how long I was in the operating room on Thursday. Pre-op and post-op where each longer (about an hour on either side). Doctor D. performed my biopsy, and he was great, but not such a morning person I don’t think.
We were all there at 5:45 AM and headed into the OR just before 7 AM. I wasn’t given anything for my nerves; I did okay. It was odd being awake for those 20 minutes. I didn’t feel pain, my eyes where covered, but I could feel the snip, snip, every time they cut a piece for biopsy. It’s an awkward sensation to explain, and I didn’t enjoy it, nor do I enjoy remember it.
Interestingly, none of the nurses that attended me knew what Granulomatosis with Polyangiitis (GPA) was. I wasn’t surprised, given that most people I have spoken to outside of Doctors P., D., and T., have never heard of it.
Recovery has been the easy part, outside of trying to keep my nose from bleeding. Waiting, yet again, for results, not so much.
With all this waiting and everything moving slowly forward, I have had time to think and reflect on life and decisions, Justin and I have to make. I’m learning that when facing adversity in our lives, we occasionally have time to press the pause button on our rush through life, and it is during these times we often end up heading in a completely different direction.
It can be challenging to think about how this has changed the path that we were on and how it will affect our future. I have to trust that there is a reason for what I have been given to endure. I’m not giving up, just trusting in my purpose and learning to move forward one day at a time.
I’ve been doing quite a bit of sketching on the iPad, mostly cause I don’t feel like cleaning up ink, paint, or pastel messes… It’s been a great way to disconnect from all that is going on, but I am needing a real mental break. To disconnect from everything for if only for just a moment.
Justin decided that while we wait for my biopsy results that we both need a break from all the heavy. So, in a few days, we are headed to the Pacific Coast, to get some much-needed vitamin sea. We won’t be there for long as I have upcoming appointments in Salt Lake this month, but we can enjoy a few days of salty sea air.
I am so grateful to have Justin as my life partner. To have someone that I can talk to that cares, even when he doesn’t understand what I am going through, he has so much empathy and always manages to know exactly what I need.
I am looking forward to getting away from the snow, even if it will still be cold.
The sea breeze on my face, the crashing of the waves, the sand between my toes. It’s not just nostalgia, or even only in my brain. Studies show time on the coast is good for our health and well-being.
So… to the sea I go, to lose my mind and find my soul.
- Mathew P. White, Ian Alcock, Benedict W. Wheeler, Michael H. Depledge, Coastal proximity, health and well-being: Results from a longitudinal panel survey, Health & Place, Volume 23, 2013, Pages 97-103, ISSN 1353-8292, https://doi.org/10.1016/j.healthplace.2013.05.006. (http://www.sciencedirect.com/science/article/pii/S1353829213000816)