This Brutiful Life

Here is the latest update . . .

Physical Health:
In the last update, I stated that I was trying to have additional testing completed, but it had been difficult to get those 2 tests completed due to factors beyond my control. I completed these same and/or similar tests in 2020 and 2021 with a previous doctor, but my main doctor and the complementary practitioner in his current practice both thought an update would be beneficial. These tests are not covered by insurance, but we all believed that these updated test results would be helpful at this time. I am happy to report that I was able to complete the tests 4 weeks ago, and I got my results back 2 weeks ago. This last week, I had an appointment with the complementary practitioner in the practice to discuss the results, and then I messaged back and forth with my main doctor as well. As we expected, the results were not great, but we now have more information and data, and that is always beneficial.

In my Onward post, I also explained the Stellate Ganglion Block as the next step in my health journey. (Please go back and re-read it before continuing on with this post.) The messaging back and forth with my main doctor this week was to make sure he was still recommending the SGB given the updated test results. He is still recommending the SGB before we do anything else.

The good news is that I have been doing the legwork for the SGB over the last few weeks knowing that this would probably continue to be my main doctor’s recommendation as the next step. My husband and I went to a consultation appointment a few weeks ago with the nurse practitioner for the doctor who regularly provides SGBs in our area, and the outpatient procedure is currently scheduled for next week unless something changes between now and then. And more good news . . . it appears that the procedure will be covered by my health insurance, even though I am having it done for an “off-label” reason. Fingers crossed.

Emotional Health:
There has been a wide range of feelings and emotions this week as is normal for someone in my situation. First, I am grateful to have updated test results, even if the results were not the best. I am also still feeling hopeful based on what we know so far about the SGB option. I would be lying if I said that I was not nervous about it at all, but I am mostly hopeful.

One of the most difficult parts of this health journey is the combined physical, mental, emotional, and spiritual fatigue. And, it is something that is hard for others to understand who are not living it every day. For the most part, I am used to it, but it doesn’t make it easy by any means. Thank goodness I have developed a significantly large set of coping skills and strategies over the last 20+ years which has allowed me to thrive in spite of my situation. [Side note: Our therapist even called me the “Queen of Coping Skills” at our appointment this morning. She is well aware that I would gladly trade the title of “Queen” for a significant health improvement, but until I can get on a better health trajectory, she wants to make sure I know how much of a Badass I am in this area. This is quite the compliment given the fact that she is a mental health provider who specializes in chronic illness and trauma and has many clients who live alongside chronic illness. She knows the intimate details of what we go through on a daily basis and how we cope with it all, so I will accept the compliment with grace, even though I don’t always see it in myself.]

Another hard part is when we do get new information and data from updated test results, it can sometimes highlight past decisions that could have gone a different way. As I have reiterated several times, we don’t have a road map to follow on this health journey. We don’t know anyone who has traveled on this path. All we have is the best information we have at the time, and the best decision we can make at the time. And, even though I know on a cognitive level that I am doing the best I can and that is enough, there are times when my heart feels heavy. When I allow all of these emotions to move through me, which is vital for sustained mental and emotional health, there is nothing better than hearing my husband say:

And, what I also know on a cognitive level is that I am still alive, so many of the decisions I have made have been excellent decisions. However, there are always people who have no idea what we go through on a regular basis and still try to share their unsolicited, uninformed opinions about the decisions I have to make. They are about 1% informed on these decisions, but they still have an opinion. So, I also have to remember to have good boundaries with others. And, even with the good boundaries I have set over the last 20+ years, someone always tries to sneak their way into the conversation. What I know for sure is that I will no longer allow anyone in my life to share their unsolicited, uninformed opinions about my situation just so that they can feel better about themselves. I will stop them mid-sentence if necessary. I love myself enough to enforce this boundary.