I’m currently running on 6 plus weeks since my last orencia infusion. I’m recalling how much it sucked to be eight weeks without it. Last night it hit me hard what this time it is feeling like. I had to think HARD about going to buy a watermelon, trying to decide if I really wanted to deal with the quick trip to the grocery store. Worse, I had to weigh the idea of being offered Dairy Queen chocolate ice cream while we were out and knowing that Squirrel Girl really likes DQ chocolate with the fact that the though of ice cream made me want to wretch and the realization that I was thinking that I would just rather fall into bed and sleep than to stop while we were out and have ice cream.
I opted for the ice cream. DQ chocolate has not yet lost its magic for me. We were in Texas long enough for it to feel almost magical again.
I’m taking too many napproxin just to get through the day. My ribs ache along with everything else, and breathing hurts. It happened when I was waiting for my orencia to be approved through the insurance. It’s happening again. I ache. I ache everywhere and I’m tired and I’m really, right now, weighing whether or not it is worth wasting spoons on doing something or if it is just better to suck it up, princess, and rest.
This morning I wrote a blog post. It was one that took a little research but was one I really felt compelled to write. Kind of like this one… compelled to write part… And I spent 9.10 of the time I spent writing it wracked with guilt. Because I offered to help with the POYRA PENN rodeo website and I’m apparently falling way behind.
The website is WAY way behind. It needs to be caught up. And I really want to help catch it up.
One week I spent completely enjoying the family time with my son visiting from Texas and all of us being together. That was an exhausting week but nothing like I’m feeling now.
This week I’m trying to get my proverbial crap together to be able to go to Brazil on business next week for two weeks. I’m putting in way more work hours that is probably prudent feeling the effects of no orencia, but I’m doing the needful. And I’m Git-er-done getting it done. Even occasionally wearing my Larry the Cable Guy’s hat… sometimes my tin-foil hat…
And I’m trying to reverse engineer the excel spreadsheet to post the rodeo results. Hunting games and coloring book pages for kids to print and stories for them to read. I’m pulling it all together.
And I’m not working fast enough. And I KNOW I’m not working fast enough and I really don’t need to be reminded I’m not working fast enough and… yeah… I know… but guilt is a wonderful thing. And I’m trying to figure out how to put more hours into my day and still not end up trying to weigh the cost/benefit of eating ice cream with my family.
I’m sitting here, listening to the troll water fountain in my garden singing to the sound of my wind chimes and the construction noise from the new Giant Eagle just a couple hundred yards away and I’m filled with guilt. Work from home means a quieter day. It also means a longer day because I don’t have my walk to and from the office to the parking lot… and I don’t have commute time… and I don’t have down time… so it is a trade off.
I am living for tomorrow when I can go for my infusion. I feel like a zombie and I hate feeling this feeling. It’s like I’m balanced on the spider’s web, trying to balance, trying to not fall through, hoping nothing tears my tenuous perch and hoping that a little life sustaining yumminess (in my case not a fly but orencia) happens my way soon…