Physical Health:
I am continuing to try to figure out my next steps on this health journey. I had a 40-minute initial consultation with a new doctor two weeks ago to determine if he is a good fit for my situation. Prior to the initial consultation, I uploaded the items this doctor requested from me: my 1-2 page patient summary, my recent lab reports, and my list of medications/supplements. It was clear during the consultation that this doctor hadn’t reviewed these items even though he requested them. Therefore, we spent most of the 40-minute appointment discussing the items he could have reviewed prior to the appointment rather than spending the appointment discussing additional relevant information.
Regardless of training or approach (conventional, integrative, complementary, alternative, holistic, etc.), none of the practitioners who have helped me the most on this health journey have accepted medical insurance due to the pitfalls of the healthcare system in this country. This medical doctor is no different, so we had to pay a premium price in order to have the 40-minute initial consultation. And, since we didn’t cover all of the important topics in the first 40-minute appointment, we had to pay for a second 40-minute appointment with him a few days later to continue the conversation. This is the financial devastation that comes with invisible complex chronic illnesses that most people don’t understand.
After both 40-minute appointments, it is clear that he has quite a bit of knowledge in certain areas that pertain to me and gaps in knowledge in other areas that pertain to me. I often find this to be the case, and it makes the decisions I need to make even harder. Also, some practitioners pay closer attention and care more than others, so I have to balance which practitioners seem to have some of the knowledge I need them to have while also considering which practitioners seem to care the most. It is a real conundrum on most days, so I am still determining next steps.
I am also needing to pace myself right now given everything else going on in our life (work, new house, etc.). My energy levels are extremely low, so I have to constantly be mindful of my schedule and where I spend my energy. Robert Groysman, MD, describes the energy difficulties in Long Covid, but the same concept can be applied to many different complex chronic illnesses:
Therefore, any plans I make have to be tentative. I have no idea how I will feel each day or even at different times throughout each day.
And, some people are kinder and more compassionate about this than others. I have found that most people aren’t able to understand this concept unless they have lived it themselves or are the spouse of someone who is living it.
Home Building Process:
A few weeks ago, they broke ground on our new house. The builder made us take a picture with golden shovels to mark the occasion. 🤣
We have had 3 big house meetings in the last 3 weeks. As I stated previously, we are the guinea pigs for this builder’s new system, so it has been a struggle at times to understand which part of the process certain items need to be completed. The good news is that they seem to be aware that their new system needs to be tweaked. And, they have been very kind throughout the process so far, so that has been helpful. Our realtor posted the picture above on social media, and one of our builder’s employees made this comment about us:
I think it is safe to say that we have been kind and patient throughout this process, and they know they hit the jackpot with us being the guinea pigs for their new system.
Needless to say, we are looking forward to the day when their new system becomes a little less bumpy.
Emotional Health:
Since I have had to safeguard my energy, I haven’t been able to publish as many blog posts recently. As a result of my hiatus, I have had more people check in with me. I have received messages of support from friends, former students, and our amazing therapist:
And, one friend noticed during one of our text conversations that I have been able to keep my witty sense of humor:
Overall, I am doing okay from an emotional health perspective. This is the most uncertain I have ever been in terms of my health journey, and that is saying something. However, I have been riding the waves like a boss, and our therapist continues to remind me that I am doing an outstanding job with it all. I am doing my best to live alongside all of the uncertainty and find joy wherever I can. I also laugh as much as possible, because laughter is the best medicine.
Brutal. The uncertainty of next steps of the health journey. Being the guinea pigs for our builder’s new system.
Beautiful. Taking steps to determine the next steps on the health journey. Safeguarding my very limited amount of energy. Breaking ground on our new home. Receiving support from friends, former students, and our amazing therapist. Riding the emotional waves like a boss. Laughing as much as possible.
Just another day of . . . This Brutiful Life: The Brutal & Beautiful Moments of My Life.
This Brutiful Life 