Living with #dysautonomia #crohns #ibd

I saw my GI doc yesterday and he put a lot of things to rest for me. He told me barring an accident, I won't die tomorrow or even next year, but that without the right treatment it would be within 5 years.

He explained that this is an autonomic disorder, autoimmune he believes, that should be put right when Crohn's is back under control. He explained that I had had this condition for a long time and that yes, it was now going after my cardiovascular system, but if we can get the inflammation under control I could delay the ending.

He didn't want to up my Remicade, which is given by infusion because, in his opinion, it was the last bullet in the gun and if we use it, there is nothing left but unrelenting surgeries. The relief I felt was extraordinary. I mean there are things I want to do like finish my Gemini series, so I have done nothing but write all week. Thank you Maer Wilson for hanging in there with me. 

I am not ready to jump back into journalism yet. I get too emotional. I can't do politics right now because I cannot bear the acrimony on both sides. It physically hurts me to see this wonderful country torn apart. Sometimes I think people forget how great they have it here. And seriously, think about open borders for a minute. Can you imagine the tide of people that would flood through Mexico to get here? Who is going to pay to take care of them? How will the children be taken care of? We do a shit job for them now, how does opening the border make it better?

You can't just open the borders as if they were water spigots because it would be more like the Hoover damn breaking down and flooding the southern half of the country. This is something that must be THOUGHT about. A PLAN must be made.  I see these silly politicians on television touting open borders and I wonder where they got their education. They certainly won't get my vote. 

I need to deep breathe for a moment. 

Things I have discovered

So, I was supposed to take my blood pressure 3 times a day, laying, sitting and standing. I discovered my blood pressure drops by 40 points when I stand up and my heart rate will jump 50 points or more. Then, yesterday, after hurting my back, I put on my back brace to give my muscles a break. When I went to do my blood pressure, it didn't fluctuate at all. At first, I had no idea what was happening or why, but then it dawned on me to investigate my back brace and blood pressure. Turns out an abdominal binder keeps the blood up around my heart and head where it needs to be and that my blood pressure will normalize. Why the heck didn't anyone tell me? I have to look this up on the Internet? 

What really gets me is the amount of young kids and adults who live with this every single day.  When they talk about this turning their life upside down, I get it. I can't imagine having to deal with this and 3 young kids, but they do. I have nothing to complain about.  I just have myself to take care of. 

I am now off to write. Thank you for stopping by and have a GREAT day.