Get okay

Last week was hard for me.  I’m not entirely sure why it was so hard.  I got bad news, but frankly, I get bad news a lot.  Sometimes it’s harder for me, and I can’t always predict when those times will be.  It’s one of the weird aspects of chronic illness. 

I had a couple days of feeling sorry for myself, which I also need to do occasionally.  Sometimes I need to sleep a lot and complain and wallow in my unfortunateness for a bit.  This invariably leads to getting mad, and that’s just not a place I like to be.  I find that it’s okay to be mad about being sick in an abstract, transient way, but not as a state of being.  I’m not really a person who is angry about being sick, and I think I’m much happier for that fact.

Friday night, I came home from work and was exhausted.  I have been getting really into these MCAS/MMAS papers (which is great – I have learned so much and I’m super excited to share) and I have had a lot of work stuff happening and my brain was fried.  I decided it was time for some self care to head off a mast cell spiral from stress. I put out the (reverse?) bat signal that I wouldn’t be around for the weekend.

I had picked up a bunch of protein drinks and baby food purees to try, so I organized them and tried out a few.  I made some vegetable stock, baked some Red Kori and Carnival squashes and made a sweet Red Kori/ apple soup and a savory Carnival/ caramelized onion soup with a little grated cheese.  I heated up some cranberries and raspberries with sugar and lemon zest and mixed them with milk and yogurt for breakfast drinks.  I did all the dishes while I cooked, tasted everything and sang along to Ingrid Michaelson.  I finished the night with 10 mason jars full of no solids meals for the week.

I woke up Saturday morning to the smell of rain and the chill of autumn blowing into my bedroom.  Me and Story snuggled under my heated blanket and watched American Horror Story for a while.  I cleaned out my closet and cabinets and threw away/ set aside to donate lots of things.  I walked the dogs, did some writing and ate a lot of very buttery, very salty mashed potatoes. 

Today, I woke up really tired and sore, but for the first time in a very long time, I wasn’t nauseous.  I am still very swollen and my GI tract feels like it’s burning, but I am bleeding less.  I’m not enjoying this no solids diet but I have to say that it is helping.  I did some yoga and took Story for a long walk.  I hung out with the family and watched a movie and tried to just relax.

I’m feeling a lot more like myself.  I’d really rather not need biopsies and scopes and surgery, but you get what you get, and it’s easier to just get it over with.  In response to a post last week about how I had gotten bad news, a friend of mine told me to, “Get a plan - and get okay with it.”  It’s great advice and a motto for living with masto if ever I have heard one. 

So I have a plan.  And I’m okay with it.