Thoughts on Life #dysautonomia #crohnsdisease

When your doctor tells you that when the autonomic nerves to your heart quick working death follows quickly, everything in your life changes. The way you look at life changes and the way you feel about life changes.  Since mine are in the process of dying and I am in the process to keep them from going completely, and as much as I want my doctor to tell me that I can stop this and he can't, I thought I'd share some ways this has changed my life.

My BFF and sister-in-law has had cancer twice in the last 18 months and her last two PET scans have shown her clear of the disease after suffering and I mean suffering from two bad ass rounds of chemo/radiation.  It hasn't even been a year yet and she still has to go every 3 months to get checked so she lives with panic the last few weeks before her PET scan. Her cancer was very aggressive and this last chemo/radiation nearly killed her. She can't do another one and has opted for hospice instead of more treatment. I don't know what my end will be like. I suppose the nerves will just stop working and I'll drop dead, but I haven't asked that question. I prefer the doc keep some secrets. 

The picture above was taken after we'd completed 20 minutes at the gym. I can't show her full face or she'll kill me. Our pictures are without make-up and as you can see my right eye is pretty swollen.  I have poor circulation around my eyes. There's a name for it, but I don't remember what it is.  Both of us have very restrictive exercise criteria. My doctor has no idea why I want to exercise, but if I must, he has given me an outline of what to follow. Like, don't stand up, sit or lay down only. The picture above was taken after we'd completed 20 minutes of very light weights. We were so proud of ourselves. Neither one of us got sick. Her heart clocked in at a solid 114 and mine, well, it doesn't change much anymore. Weird, but there it is. 

We hadn't discussed how are lives have changed until I said, "Sometimes I do things I know I shouldn't do because I want to make the memories." 

She answered, "You think like me."

We didn't need to say anything else because we've been together since the 1st grade and we know each other pretty well. 

I do have some goals I would like to achieve.  

1. Finish my Gemini series: I find I have to edit slowly (sorry Maer) because my eyes get tired and my brain gets sloppy, but I will get there. THEN I want to write a series about a crime detective who has Crohn's disease. 

2. Reestablish relationships with people I have loved deeply and have let pass out of my life. This is very important to me, but I don't know where to start. I guess just putting it out there is enough. If the universe wants it to happen it will.

3.  Figure out who I am. Why I believe the things I do and why they are so different from the mainstream. Soul searching is a difficult process because it entails a deep look into ones life, the good and the bad, as rough as some of those edges might be. This means challenging long held beliefs and being honest with ones-self. Priority number one is getting to know the people closest to me. I have a glass half full personality so I flit through life genuinely happy. I project that happiness onto other people even when they are not happy. It is just who I am or rather, who I was. 

When the doctor told me there is little they can do for me other than treat the symptoms I spent a couple months whining and crying. The next month, I was in and out of depression. But this month, November, I have experienced a freedom and a depth that has surprised me. I am OK with death and becoming OK with death frees me from all the little stuff that really doesn't matter.  It also gives me permission to stop, look, and listen and to quiet the voice in my head to experience peace. I don't have to do all those things I had to do. Those I want to do, I will do, like write. Karen and I plan to play as well. We want to go with our families to Alaska on a cruise. We need to shop more, but that requires exertion and we are working on longer and longer walks. My big plan is to move from 4 to 5 pound weights. That should take me about 3 weeks. Karen has loftier goals, but I'm happy to just do what I can. In the meantime, Karen and I shall live. But most importantly, we will live well.