Physical Health:
I have begun the first step of the protocol designed by my new team of doctors. During the initial consultation, they let us know that this may be a long process due to everything my body has been through and the damage that has occurred as a result. And, the first few months could be rough, but they are hopeful that I will start to notice some improvement after that. So far, there have been some rough days, but I have been managing it well. I usually have to be more cognizant of my physical capacity and energy expenditure than someone who is not living alongside an invisible complex chronic illness, so this part of the journey is no different in that regard. Everything — and I mean everything — that needs to be done has a cost in terms of energy, so I have to be mindful about each endeavor:
We had our second appointment with the medical team last week, and one additional practitioner was included on the video call. Even though this additional practitioner is the person on the team who received all of my new patient information and data, she was not prepared for the appointment, so the appointment was more chaotic than the initial consultation. I can usually tell right away if a practitioner has reviewed my file prior to an appointment, and it was clear to both my husband and me that this practitioner came into the appointment unprepared.
As a result, I emailed the team the following day to see if I should schedule a second “initial consultation” to make sure that everyone is on the same page. I explained how grateful I was for their time, and how important it is to me to have everyone on the same page. I made it clear that my husband and I were willing to do whatever it would take to make that happen. Two members of the team, one being the additional practitioner, replied to my email and assured me that they are working together as a team to share their thoughts, perspectives, and recommendations to develop the best plan of action for me. They understand how important collaboration is for my case, and they state that they will work together to guide me through this process.
Home Building Process:
The home building process has been rough. Things are progressing, but it is requiring more oversight by my husband and me than is normal for new home builds. Our realtor has told us many times that the amount of time my husband and I are having to spend on it due to the builder’s level of disorganization is very unusual. We knew it was going to be a lot, but no other person we know who has built a home both in our price range and in our general location has had a similar experience to us. Of course, we get the abnormal experience. 🤣 What would it be like to have a normal experience in any aspect of our life?!?
Emotional Health:
There is always an emotional health side of this health journey. Both my husband and I are maxed out right now, but we are doing a good job of sticking together. We were disappointed that the additional practitioner came to the follow-up appointment unprepared, because it made the entire appointment feel rushed and chaotic. My email the following day kindly and respectfully indicated my expectations and needs as the patient during this process, and we are hopeful that it will make a difference at the next appointment.
Another emotional health aspect that pops up from time to time has to do with both feeling like a burden and abandonment. I saw this social media post the other day:
I do the work every single day to make sure that my emotional health is stable, and I do an excellent job in this area. However, as is normal, there are times when I feel like a burden. It just comes with the territory of invisible complex chronic illnesses. And, since I have actually had the experience of people in my life leaving when things get tough, I have to work even harder to make sure that their inability to stick around doesn’t become a permanent part of my emotional and psychological landscape. Seeing someone else’s social media post about this topic reminds me that I am not alone, and that the work I have done, and continue to do, in this area is important.
It is also worth noting that I have some wonderful people in my life who have stuck around and have told me that there is nothing that could happen on this health journey that would make them leave. You know who you are, and I am beyond grateful! ❤️
Brutal. Needing to be even more mindful about energy expenditure. A second appointment with my current medical team that was disappointing. An unusual home building process. The emotional work required of people living alongside invisible complex chronic illnesses.
Beautiful. Starting next steps for my physical health. The home building process continuing to move forward. Sending a kind and respectful email about my gratitude for my current medical team *and* about my need for collaboration and preparedness moving forward. Seeing a social media post that reminds me that I am not alone in the emotions and feelings that are present on this journey, and that the work I have done, and continue to do, in this area is important.
Just another day of . . . This Brutiful Life: The Brutal & Beautiful Moments of My Life.
