Moving forward when the destination is unknown. 

“You wake up every morning to fight the same demons that left you so tired the night before, and that, my love, is bravery.”

Hey there! Long time no see.

Since I last blogged a lot has happened. Let’s start with the good. I received my service dog Taxi, and he has been such a gift. I have another post planned about him, but I could talk about this dog for days. (As my friends and family well know, as they’ve had to hear it.) I’m also very excited for some new projects with the organization I am a part of, We Are More (we have a Facebook and you should totally go check it out). I was also able to attend Comic Con a few weeks ago, and I had an amazing time geeking out and seeing so many amazing artists and cosplayers.

My friends and I at Comic Con

And now on to the not so good: my medical situation is unstable at present. I’m having lots of anaphylaxis that is not controlled or well managed. My doctors are doing their best, but everything takes time, nothing happens instantaneously like I might wish it did. New meds and new treatments are always an ongoing process. In the past few weeks, I’ve received my first xolair injection, and my second dose of intravenous immunoglobulin. I’m hoping that these new treatments show efficacy sooner rather than later. The IVIG is definitely helping with some of my symptoms, so that makes me optimistic. My stomach is actually doing quite well, so once these reactions begin to be a little more controlled life will be easier.

IVIG round two!

I’ve written a lot over the past couple days, but have been struggling to word what I’d like to say. The posts have been mostly about finding a way to carry on when the destination is so very unknown. Uncertainty is the foundation of all our lives- and some of us are just a little more aware of that than others. It’s an uncomfortable thought, and one that those with chronic illnesses are forced to embrace.

I don’t know what tomorrow brings. It may be a good day, or it may be one that involves countless medical interventions just to keep breathing.

I’ve had a lot of fear in the recent days and weeks. I’m scared of what’s happening to my body. I’m scared of the bad days. I’ve had a lot of trouble continuing to move forward when it seems like there are roadblocks at every turn. You would think after so much time spent with my body that it would get easier when it fails…news flash. It doesn’t. Or at least not much.

It’s easy in these circumstances to view your body as the enemy, the very thing you are fighting. I’m trying to change my perspective to see it as an ally- a friend for whom I need to provide support and love and care. So for anyone who feels like your body is betraying you- be gentle with it. It’s trying its best.

There’s a favorite song of mine that goes “Let it roll right off your shoulders…don’t you know the hardest part is over?” And I listen to it and wonder if it is.

People talk about bravery and strength, but I don’t feel particularly brave or strong. I feel tired and frustrated. I’m trying to remind myself that strength doesn’t always mean being positive or making it sound better than it is- because sometimes life is hard, and strength is just carrying on.

Got out of the house to go to the bookstore.

And so that’s where I am right now. I am uncertain and tired, but I know that if this is my life, and these are the cards I have been dealt, than I WILL live this life to the best of my ability. I will make the best of my good moments. And embracing the bad moments is a work in progress, but I’m getting there. I’m getting there. Things like crafts, friends, my amazing parents, and my big dork of a dog make it easier.

Taxi and I : suddenly my bed seems very small!

So if you have the gift of free breathing, of eating what you please and and doing what you wish, please don’t take it for granted. The little things are truly the most important. Those minor details of life most of us gloss over…those are the things that matter. Sometimes even more than the big things.

This is a bit of a stream of consciousness post. I have some other things written out and planned, so look out for those in the coming days/weeks.

As always, thank you for the support and love. Thank you for reading my words.

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