Category Archives: Health Updates

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.

Control and it’s absence: The Invisible Project

I’m a control freak by nature. I’m a pain about group projects, because I end up wanting to do the work myself. I dislike unpredictability, preferring a solid foundation of plans and goals. Through my illness, I’ve lost control of almost everything at one point or another. Before I got sick, my body was the one thing I always had control over, even if other things were falling apart. And suddenly  I didn’t even have that.

I’m the kid who’s had her life planned out since first grade. I was going to college, become a doctor, go to the Olympics, and then somewhere in there have six kids. I think I was pretty adamant about that, at six. As I got older, my dreams and plans evolved, but they were still concrete, and I never once imagined those things could change. When they did, my plan for my life was one of the first things I grieved. I was free-falling with no parachute, and when I crash landed somewhere in between hope and desperation, trying to find my footing on an ever slippery slope, all my carefully drawn maps and plans fell by the wayside as my world changed from living to simply surviving. For a long time, I refused to think about what would happen if I never “got better”. I refused to acknowledge the fact that my life had changed irrevocably, and that even if I woke up tomorrow cured, I’m not the same person who fell out of an airplane with nothing between me and life except for the open sky.

This past weekend, I had the immense privilege of traveling to San Francisco to attend the Invisible Project Gala. The Invisible project is a program by the U.S Pain Foundation, where they tell stories of people living with pain. I was lucky enough to participate in the Kids and Families Issue, and the experience was such a gift. There’s a lot of my journey that isn’t pleasant, to go through or to remember, but to look back and be able to own my story and who I have become- that is the greatest gift of all.

The Invisible Project isn’t about finding a way to be cured, or to be fixed. Rather, it’s about finding a way to manage and move forward. This project and it’s stories are proof that we can and will adapt, despite the odds or the circumstances. I talk about focusing on the silver linings rather than on the collateral damage, but sometimes the damage cannot be ignored. It can’t be fought through. It is simply there, and the best thing you can do is learn to keep going.

I’m no longer scared of not getting better. Sure, I’d like to. I still hope I will. This isn’t what I planned for, or what I ever expected. But this weekend, as I heard the stories of surviving and of living, I was viscerally reminded that I can do this. That my life can and will still be beautiful and strong and joyful, even if I never “get better”.

One of my all time favorite quotes is from the Lord of the Rings. “Not all those who wander are lost.” I’m still wandering. My detour hasn’t yet led me back to the main road- and maybe it never will. Life is rarely what we expect. But when I laid out my plans, all those years ago, I thought of what I wanted out of those dreams. I wanted to be happy, to be able to have those I love around me, and to watch them succeed and find joy. And those things, the things that are truly important- they can be found even in the darkest of times, even on the rockiest roads.

Strength isn’t about being cured or winning every battle that comes your way. If you take away nothing else from my story or the Invisible project, take this: we are much stronger than we first believe.

So here’s to impossible things, to surviving- to finding new roads, new lives, and to getting lost along the way.

Cheers.

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My dad and I. 

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.

Doctors, frustration, and ports, oh my. 

I had my immunology appointment on Tuesday. The doctor and his resident were both very nice and clearly want to make sure that they are covering all their bases. He seemed cautious and a teeny bit skeptical. I’m a little frustrated with that because he has access to the records where the doctors wrote that my parents and I are crazy, and that I was making my symptoms up. I haven’t seen those doctors in almost two years, and we have thouroughly disproved that notion with data, but he doesn’t know that. He suggested starting a few new medications in hopes of getting better control of the reactions, as well as some testing that we can do in order to move forward. I really wish that doctors who incorrectly treated me and caused a lot of problems were not still effecting my treatment, even in small ways.
I had blood drawn at the clinic, and it took three phlebotomists and five sticks (plus a lot of fishing around) before we had enough blood in order to fill the few tubes that the doctor wanted. Oh, how I miss my central line. My dad called the vascular surgery center this morning, and I will be having my port placed next Wednesday, rather than at the end of June. It was delayed because of the reactions, but it’s really kind of ridiculous to continue without a line when I’m needing access so often. I really trust the people who are going to be putting it in, and I’m confident that they will deal with any issues that arise during the procedure.
I had a reaction today, and was very close to needing my epipen, but luckily the medication finally hit and it started to calm down (thank goodness!).
I see several of my doctors in the next couple weeks, and I also will be traveling to Oregon for something I’m really looking forward to: I’m getting a service dog! I’m so excited to move forward with a new chapter of independence.