The "Cost" of Staying Alive

This has been something that has been on my mind a lot recently as I learned I need cataract surgery. Cataract surgery in 25 year olds is not a thing that typically happens and it wasn’t what I was expecting at all when I saw my eye dr last week. Cataracts can be a side effect of one of my lupus medications (prednisone i.e. steroids). So here we are having to make decisions and have surgery that will probably result me needing glasses for the rest of my life.

I know glasses aren’t the end of the world, but it’s just another thing to add to the ever growing list. I have steroid induced cushing’s syndrome, I’ve gained an insane amount of weight, my skin is always breaking out, I bruise much more easily, and mood swings among other things. These are just the side effects from my one medication, but this is the same medication that has allowed me to finish half marathons, travel the world, work a dream job, volunteer with chronically sick children and kind of live a life for the past 4ish years.

Is it “worth it?” At one point does the side effects and negatives of a medication outweigh the benefits? I mean I’m still here and still fighting so I guess at least for these moments it’s still worth it. That isn’t even including the side effects of my other medications.

My dr has increased my dosage of my one med hoping to decrease dosage of my steroids and this med is causing hair thinning and may cause cancer. Every morning when I take my pills I knowingly accept these risks as I know the risk of not taking it is much worse.

My favorite is that some have the side effect of death. So here I am fighting illnesses that can kill me or taking pills to fight these illnesses that can kill me. It seems like lose if we do, lose if we don’t situation. And truthfully all of this sucks and isn’t decisions anyone should EVER have to make. Better, less toxic treatment options are needed. A cure would be lovely, but we’ll start with better treatment options.

No matter how much I hate this, hate these side effects, hate what these medications have done to my body, I’m still alive, still running, still trying to take on the world, and know that I still have a lot of fight left in me. I can use this fight to share my story, spread awareness and raise much needed funds for research.

This morning I was able to get in a much needed run and it was the perfect chance to clear my mind. Running is so cathartic and it gave me a much needed break from all the thinking and difficult decisions I’ve had to make recently. During my run, I was able to enjoy this beautiful day, the little things and revel in fact that despite all of this my body is still doing this.

Thankfully I have a 5k this weekend and Star Wars Dark Side Challenge 2 weeks after that. Lots of exciting non-medical things to look forward to plus more medals to add to my ever-growing collection!

Bravery is...

Princess Half 2016 I went with a Merida inspired outfit. I didn’t used to be a Merida girl, but I’ve been all about celebrating bravery these days. My body keeps on pushing my well past my limits and I can’t count the times I’ve wanted to give up, but instead I keep moving forward.

I’m finding bravery in the strangest of places like on the 2 hour drive to the hospital to see a specialist, in my 4th trip to the pharmacy that week, in the waiting room of my doctor’s office, and in now having to use 8 needles on infusion days instead of the 4 I used to use.

I face my fears and through the tears, I’m not letting these illnesses win. Some days I may feel like they’re winning then I look back at all I’ve done, all I’ve overcome and realize that I can keep doing this. Just like Princess Half 2016 was the first ever year for Team No Lupus which wouldn’t have been created if it wasn’t for my persistence.

I helped them and showed them the ways and wouldn’t let this go. Eventually they relented and Team No Lupus was created! We may have been a small group, but we were a mighty group. I can’t believe we’ve raised over $5,000. I love that this is something we can continue in the future and it’s not just going to end when Princess half ended.

Princess half once again stole my heart and I will keep doing this race. It’s the perfect opportunity to celebrate bravery and courage. Plus I have to hope for another PR next year! This year I was 46 minutes faster than last year so who knows what next year will have in store.

Two weeks later I did a 10k and had another PR. After that race I had my first ever allergic reaction to kiwi. Following that I’ve learned I have a latex allergy and need to avoid kiwi and bananas as well. I also need to carry an EpiPen as if my first reaction wasn’t scary enough, my next reaction could be much more severe.

Never a dull moment and my body keeps on throwing challenges at me. I dig deep to find that bravery and say challenge accepted.