And we keep living anyway… Health Update

When I was in advanced placement classes in the beginning of high school, it was simple to imagine the exam. You knew it was coming, had planned for it all year, but somewhere it got lost. It never felt like it would come. Time was elastic in those moments, fast and slow all at the same time. The recoil was striking- all of a sudden, it was done.

When dealing with life, most people want to think the best case scenario is the one most likely, because it probably is. As if the bad things won’t come if you don’t consider them. Even if you’re sick, sometimes it seems as if time will stretch forever, like the recoil will never come.

I haven’t written in months. No, scratch that. I have written, but it’s less an update on my health or a post about advocacy as it is regurgitating my thoughts into poorly crafted sentences and run on paragraphs. I haven’t done a true health update in a very long time, so here goes.

In July, I was admitted to the hospital following a spate of unmanageable anaphylaxis. I was admitted for three weeks while the doctors threw everything but the kitchen sink at my mast cells, but knowing them, they probably would have chucked it back. (If only I could draw- I’d make a mast cell comic.) I had my feeding tube replaced, back to a button, which is much smaller and more comfortable. Eventually, I was stable enough to be released, and was in mid August. I came home with a truckload of new supplies, which was fine by me, because they helped control things out of the hospital.

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Taxi made my room quite popular among the staff.

I stayed reasonably okay through September. I started school carting around a few new tubes, and I must say, I’m probably the only student who was quite literally shooting up during class. My mom laughed at that, and so did I. I turned 18 in September as well, and my best friends surprised me with a party.

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My 18th (surprise) birthday party. Left to right: Shira, Ellie, Leah (and her service dog Marcus), Me (and my service dog Taxi.)

In October, one mess had led to another, and a few steps down that line landed me sans the pain meds I’ve been on for quite a while. Let me just say: I do not recommend withdrawl. It’s pretty lame. I ended up in the hospital, which led to my meds being screwed with, with led to major anaphylaxis and a Code Blue. Again: do not recommend. However, I can now confirm it looks a lot like in the movies. I managed to avoid intubation (which is a streak I’d rather like to continue), and I spent a bit in the ICU. The various medical professionals in the rapid response team that answered the code were amazing, and so was everyone in the ICU. (Plus, the ICU nurses were very good at making intimidating signs to tell people wearing scent to stay out of my room.)

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In the ICU.

Since being released, I’ve been okay. I’ve continued with IVIG, started a round of iron infusions, changed up my anxiety meds, I should be getting my new wheelchair soon. Things move up and down, of course, but in general I’m pseudo stable. And the world continues, as it should.
Sometimes I feel like I’m frozen in a sea of fast moving friends. There is work and more intense schooling, sports, and all the other inconsequential things that are everyone’s normal: just not mine. A constant merry go round. When riding, the whole world is moving with you, but when you’re watching from behind the railing, all you see is the movement and the occasional hand wave.
I don’t want to overemphasize the band, because there’s been a lot of good things to0, many of them things that didn’t seem possible in July or October. I’m home for the holidays, which is great. I’ve been able to finish college applications, continue with school, and hopefully soon take (and pass) my road test for my driver’s license.  I’m planning for college acceptances/rejections to arrive next spring. This is both wildly exciting, and anxiety inducing. What if I’m not doing well enough for school? What if medical costs uproot the stability we have now? What if the next steps don’t work? What if, what if, what if.

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“Life doesn’t discriminate between the sinners and the saints, it takes and it takes and it takes…and we keep living anyway.” Hamilton lyrics so accurately describe my life. It’s a dream of mine to see it, and to meet Lin-Manuel Miranda.

 

 

 

There is no limit on uncertainty. You could walk out the door tomorrow, and be hit by a bus. (This is the analogy my mom always uses.) You could win the lottery. Get a promotion. Be diagnosed with a rare disease. The point is, we walk through life not knowing what the next day or moment will bring, we live in waiting for the unknown. So, in this moment of infinite possibilities, find the joy, the hope, the love. These emotions will carry us through this uncertain marshland- through the painful and impossible moments. As I’m fond of saying: we humans adapt.

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The true purpose of service dogs.

No one is guaranteed tomorrow. It’s such a cliche, but if this last year has taught me anything, it’s that this moment, right here, right now- this is your life. The future is there, yes, but this present is what you have. Despite the tough moments, despite the difficult days- the world rolls on. We keep living.

2016 has been a roller coaster. I am so grateful to have faced this year with those I love by my side. And I know that whatever 2017 brings, we will meet it as it comes- with grace, with dignity, with love. Happy Holidays.

“She was beginning to realize people could survive most things. Not because they were brave or strong, but because there wasn’t any choice.” ~ Candice Proct

 

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At a music festival where I saw Fall Out Boy, my favorite band.

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