Last Friday, we found out very unexpectedly that my team of 2 doctors who had been treating me at least 2x per week since last March (2022) was not going to be able to treat me anymore (at least not for a long while, and probably never again). This was the first treatment plan that had worked for me in many, many years, so I was heartbroken. To find a rare treatment that works for someone in my situation is a miracle, and then to be told that it wouldn’t be possible anymore was a gut punch.
I used all of my tools: I told the hubs that I needed him to be near, we video-called close family members, I reached out to some friends via text, and I let our therapist know that we would need support. We both tried to do as many of the stress-relieving strategies as possible that we have learned over the years.
For us, though, this is more than stressful. It is traumatic. For someone who was close to dying a year ago, and who has had doctors abandon her many times over the years because her case was too difficult to solve, this situation is traumatic. For a spouse who has had to watch his wife live with excruciating pain for many years and almost die without being able to help her, this is traumatic.
So, we use our tools to try to release the emotions and move through the situation in a healthy way. We use our tools to make sure the trauma gets resolved and doesn’t get stored in our bodies. We use our tools to stay connected to each other. We use our tools to try to take one day at a time and make decisions about next steps from a grounded place instead of a place of fear. We remember to have gratitude for what we have. And, we ask for support from our therapist who specializes in chronic illness and trauma to make sure we are processing the situation in the healthiest possible way.
We keep going. We seek out new practitioners who might offer some kind of treatment similar to my previous treatment even though there are not many options. I update my medical records and medication/supplement list. When a good option crosses our path, we want to be ready. We make calls, we ask a lot of questions, and we move forward.
This is not without all of the emotions and feelings that are normal for people in our situation: Shock, anger, sadness, gratitude, sadness part 2. Can we get off of the “starting again” rollercoaster now?
Brutal. The “starting again” rollercoaster.
Beautiful. The love and connection I share with my husband. Tools to help us get through this situation again. Family and friends who love us.
Just another day of This Brutiful Life: The Brutal & Beautiful Moments of My Life.
This Brutiful Life 