Posted on December 20, 2013
December 20, 2012 was a rough one. Actually it was a lot more than rough, I lost my shit. I’d had a long awaited doctor appointment. It didn’t go quite as I had hoped. I could tell you how bad it was, but I just acquired a new Tumblr skill (uploading gifs) so I’m going to show you instead.
This appointment was epic in its insanity. I consider it to be the worst day of my life. Since then, I’ve had other bad days… like the day Hanky peed on the clean laundry I was folding, or the day our Jeep got broken into for the 3rd time (those rascals peeled away the duct tape holding together the previous break ins and crawled inside – did they really think there was another radio to steal?) Anyway, I would think to myself “Today is the worst day of my life!” But then I’d think again and realize that December 20th really did happen. And every time agree (with myself) that December 20, 2012 was the real worst day of my life. It was a CIDPocalypse.
I keep running across this shirt, always so frustrated that it’s off by one day.
12/21/12 was the date of the Mayan apocalypse. The end of a 5,126 year long cycle that was predicted to culminate earth shattering cataclysmic events. How can I blame the Mayans for being off by one day? I wonder if LookHuman would be open to updating their shirt so that it more accurately reflects my CIDPocalypse. I’m going to write them. I’ll let you know what they say.
Anyway, back to the worst day of my life. (I really need to work on smoothing my transitions) So my parents and I get home, and they decide now’s the time to sit me down for an intervention. This is when they say (and I’m not sure if I’m paraphrasing or not): “If you think better, you’ll walk better.” Thanks CIDPocalypse doc.
So the intervention was an epic failure. Cue the gif of the Titanic going under:
I often see CIDP patients searching desperately for a doctor through support groups, their hope diminishing. I’ll admit, it’s not easy, it can even be a destructive process. Finding a CIDP specialist is like hitting the jackpot. They are few and far (I’m talking hundreds of miles) between. The CIDPocalypse doc was not a CIDP specialist, but he was a Neurologist at a prominent hospital and he had grown up in Canada, so I thought he’d be nice. Lesson learned. Don’t stereotype.
Anyway, exactly one year has passed. And I am so content in my life. In terms of my neuropathy, very little has changed, I’d even say my strength has diminished a bit. But you wouldn’t know it looking at me. I’ve gained the weight back that I had lost. I was frail. I’ve learned that I can’t think myself out of my odd gait or my low energy, but I can allow myself to live a rich life despite these boundaries. I wasn’t living by the time that appointment had rolled around, I was deteriorating. I’ve always felt that the more limitations I had, the more creative I was. My beautiful apartment is a testament to that. It’s been so nice applying this creativity to my life and to my mental and physical well being. When you are struggling medically, it is so important to surround yourself with the ones who understand. And I have done just that, I am proud of the life that I live and the ones that I love. My partner Megan has spent nearly two years watching, listening, encouraging… and making me do the dishes. We’re a team and we tackle this together (even though we can both get frustrated). She may doubt my dishwashing abilities, but she does not doubt my struggle.
So if year one was getting sick. Year two was spent getting diagnosed and learning to cope. I hope in year three I will find ways to have a career, to be a productive member of society. I will need to be creative, finding ways to contribute while still taking care of my body. But I’m optimistic.
My parents moved from Ohio to Florida since CIDPocalypse. I’m currently visiting them. This is the first time I’ve seen them since that debacle. And I’m trying. They’re trying too. I wanted to rewrite the painful memories of last December 20th. So my lil’ sister, her animal loving boyfriend (that description might make him sound like a creeper, but he’s really great) and I went to a manatee park. It was amazing and yes I like manatees much much more than EMGs.
I know not everyone will be convinced, but I don’t feel a need to prove anything right now. I’ll continue moving forward and sharing my experience. Today, this difference of opinion doesn’t feel like the Titanic sinking, and I’m filled with pride. I’ve started building a life out of the apocalypse.
Lesson of this post: It gets better. Well, it gets worse. But it also gets better.
This is the first blog post I am sharing with SuperShrink, so I wanted to say hi and welcome to my blog.
Update: I know the gif of the Hindenburg Disaster is not working. I suppose I shouldn’t have said I have mastered gifs.
Update 2: It appears the gif of the Hindenburg Disaster is working on my phone. I clearly don’t understand gifs.
Update 3: Check out this amazing CIDPocalypse Update!