Yesterday was a no go day for me, my system, my brain was on a shutdown, so it was a day at home, just trying to get from the start of the day to the end of the day. I thought of many things that I would, could, may and wanted to do, none of which happened, as I was unable to put any of it together, this is what happens on a bad brain day. I was happy enough to just be at home, and just be, to not try to have to navigate anything. This came after having three or four lovely days of being able to go for a drive, to go on my bike rides, but this is my life this is my vascular dementia.
Today my day started with an early morning in person visit with my doctor, he had asked for the meeting, I always feel so fortunate that he actually puts thought into my well being. He doesn’t just sit and wait for me to have to or need to see him, he is invested in my health care. So it was an unusually long visit and considering how many don’t get to see there doctors at all as with the pandemic most things are done via video calls or phone calls, again a silver lining for me, I am always grateful and understand how fortunate I am. We went over tests he had done, then we discussed why he does some the things he does, it was great to hear him explain that he doesn’t want to ever miss something, because everything gets attached to my vascular dementia, something else I am grateful.
We had a lengthy chat about palliative care, life and death, we talked about my husbands death, and my mom’s death, he was the doctor for both, and he helped and worked with me to ensure they had the kind of end of life and death that they wanted. Another piece of my gratitude. It was a really good talk, we talked about my own illness and how at this point and given the last 14 or 15 months I have had with my health, understanding that they cannot fix my vascular system, their is no magic pill, no surgery, not anything, we talked about what happens why I have these good runs of days and sometimes months of really challenging symptoms and stretches of being so unwell, we were discussing my blood flow, both agreeing and understanding that when my blood flow ( almost simultaneously we said its like there is a dam and the gate is open the flow is good, the gate closes, and it randomly effects different organs, different areas throughout my body, depends which area the gate is closed stopping paper flow, This is also why there is such a challenge with inflammation.
We both agree that I do all that I can to help myself, both nutrition wise, exercise, sleep, all the areas that I am able, if I didn’t things would be far worse than they are, even though they have gotten worse, that is in essence how vascular dementia works and for each person it will vary, this is my vascular dementia. He wanted to have this discussion, to ensure that I know that he will continue to help support me through the downturns and difficult times, and if that requires hospitalizations as it has over the last year or two, then thats what will happen, but he also wanted to ensure that I am fully trying to get the most out of my good days when they present themselves, and that the monitoring and knowing when I should just stay put is a very important piece. this was a conversation about my quality of life. It did me a lot of good to have these discussions with him today. As for my shot, he just wants to ensure I get it once I am notified of my appointment, which hopefully I will get that notification this week, for sometime in May, in the meantime, keep doing what I’m doing.
I know it was a doctors appointment, it felt like a visit with a friend, and a much needed chat, and as I have had a lot of things weighing heavy on me recently, and I will write about those in another blog, today did much for me.
We talk so often about the medical profession and how and the ways they could do better, I know having who I have in place as a doctor, has been and is not the norm for many. He is a shining example of what good doctoring can do for someone. And talking later today in a meeting about many things one being to remember to look for and find the things that are good despite our diagnosis, I was thinking that my doctor is definitely one of the good things that I have.
Chrissy's Journey 