One year. I cannot possibly begin to fathom the idea that it was exactly one year ago that I was found passed out on a bathroom floor.
I still remember most of that night like it was yesterday. I would be remiss if I didn’t mention how grateful I am to the people who were there to take care of me that night. If it weren’t for them, I may have been forever banned from Petco Park, and I definitely wouldn’t have gotten home safely.
At the time, I obviously had no clue what was happening. I wouldn’t know for almost 2 more weeks. In fact, I had no idea what was going on. I was scared. I was more scared than I have ever been.
I’m not scared now.
The thing that really starts to get me is exactly how different life is right now than it was then.
In the last year I have had so many huge life changes that I can’t even begin to comprehend them all. For starters, I have learned to deal with the fact that I am sticking needles in myself 3 times a week. That was a huge leap to overcome.
I’ve learned to fight for myself and that I know when something is wrong with my body. I’ve had to figure out how to fight for myself and my healthcare. I’ve had to grow up.
That was the biggest thing about all this- growing up. Before, I was content with letting other people narrate what I was doing, or just ignoring where I needed to go. When this happened to me, that wasn’t possible. I was racking up medical bills and quickly (the first night alone was around $15,000!). Letting things go wasn’t an option anymore. I’ve learned how to handle more than I ever thought was necessary.
Speaking of it happening, that’s another thing I’ve had to learn to deal with. The other day I said something that sparked all kinds of lightbulbs: “This happened to me. There was nothing I could have ever done to stop it.” It hit me. There really was nothing I could have done. This isn’t my fault. I’ve always thought that we can control everything, but we can’t.
But I can do something about this now, and I am.
I hit a bit of a rough patch a few months ago. I had sort of succumbed to the idea that I was going to be disabled. I had accepted what I felt was inevitable. I was still doing my treatment, but I didn’t care about going any further than that. I blamed the “holes in my brain” on everything. I still do, but not in a serious manner.
Then I literally had someone grab my face and yell at me to get it together. That I wasn’t this person. I was told that I used to have control of this thing and now it had control of me. Ouch.
From then on, I took control.
There is concrete evidence that I am doing something right. The lesions on my brain have either a) disappeared or b) shrunk. There is one that is still pretty obvious, but it was the one on my optic nerve. I wasn’t freaking out over that.
My neuro ophthalmologist called my recovery “remarkable” and said there was no evidence that I ever had optic neuritis. I don’t have to follow up with him unless I have more issues (cue celebratory dance!).
They did raise my Rebif dose back to 44 mcg because of a lesion they found on my spine. It’s been taking some getting used to. Rebif side effects are no joke.
It took me a while to feel comfortable with the idea of switching jobs. I knew how understanding my bosses were at this job, and I wasn’t sure how others would be. After a 3-month search (that was intense for various reasons), I am starting a new job on Monday. I will have health insurance in a few short months!
The other big thing that I wasn’t sure I would be able to do again? Running. In April, I couldn’t run half a mile without becoming disoriented and having strange pains- like my teeth and my ears. About a month ago I couldn’t run a full mile. Today? I ran 6.3 miles. I don’t think there has been any better way to show this thing who is boss.
Honestly, I haven’t physically felt this great in a while. It’s nice to be taking charge of this disease again. I don’t ever plan to have another setback like the one I had a few months ago. I know that I may relapse from time to time, but I won’t let it stop me again. I am in charge, not this disease.
And I don’t plan to ever be found facedown on a bathroom floor again.