Sometimes it’s virtually impossible to be positive.
Despite this blog and my obsession with Instagram ([at]simplygwyn if you are curious) I’m a pretty private person. I don’t relish in other people’s misfortune (or fortune) and I don’t always like to share my own. Have I had tough times? Oh, yes. Have I had amazing triumphs? Yes, it could be said. Do I tend to share those specifics either here or via my social media identity? Usually not.
Today has been a brutal day. For many reasons. MS, obviously. I finally slept through the night but I woke up exhausted and without motivation to do anything. Feeling that way is frustrating, sometimes as though I’m watching myself through a thick pane of glass, all the details blurry and no way to communicate to myself. It’s hard for others to understand — there’s nothing physical that signals my distress, my struggles. I look fine, so I should be fine. I discriminate against myself using that logic all the time.
When you start a day feeling listless and then one thing after another pummels you — it’s very hard to rally. I rode my bike — something that helps sometimes, but doesn’t always. I did one of my longest rides ever — 32.1 miles in 90 minutes. Yay! Go me …. I think.
John got home close to 4pm and brought in the mail. Yup, I’d been such a slug all day, I hadn’t picked up the mail on Lucy and my afternoon walk. It happens folks, that’s the reality of my life. In the mail was a delightful form letter from our new insurance advising me that after review, my MS medication would not be covered and all future costs would be 100% our responsibility.
Whomp. Whoosh. Air sucked out of my lungs, tears stinging my eyes. And this was at the end of an already brutal day.
I’ve been on five drug therapies for MS. I’ve read all kinds of blogs and posts about controlling MS without drugs. I drink green smoothies religiously. I can be enormously fussy about the food I eat. I work hard every day but I cannot NOT be on medication. Before Tysabri I had Lydia (my cane, for those who weren’t reading my blog in 2014). I could barely walk up stairs. My disease progression was aggressive and scary and bad. And now, here I am. Blue Cross Blue Shield of Michigan has decided that they won’t cover the only medication that has ever worked for me. Somehow, a huge insurance company now controls my life. Literally, my life.
Today, it must be said, has not been a good day.