Thursday, December 26, 2013

A long, long update

So, let's see, when was the last time we really talked?

Oh. Oh my.

Well, I started a new job at the end of July. That's been going well, though I will say it is stressful compared to my last job as I actually do things and have responsibilities now. I'm working in the office of a department at a local university. I love it - and, more specifically, I like being able to pay all my bills and cut down on some of my debt!

In August, we got our engagement pictures done and holy crap you guys I have just under 8 months to plan this shizzzzzzzzz. There has been some drama (i.e., we picked a florist and then she bailed) but we have plenty of time to recover I hope. I have no idea how to pull together some of this stuff and stuff our ideas into the melting pot of love... which sounded less perverted in my head haha.

September saw me feeling the best I've ever felt in my entire life. I was running - sometimes up to a mile! - throughout a chunk of time at the gym. We went hiking several times and it was tons of fun... My inflammation levels were all low, and my pain was controlled! Everything looked great...

But then, thanks to my new job, I got new insurance and that required a prior auth on my lyrica - which we had to go through 2 months in a row because they don't freaking know how to do paperwork over there. Pain levels were high, and the stress that brought (and other crap) didn't help things. December saw me with high inflammation levels and the enbrel wasn't doing a thing to help with it.

The last few months have seen us facing a number of high stress and scary incidents too - my mother was in a terrible car accident that she miraculously escaped with bruises and a concussion, but has her a little road-weary. My step-dad had to have further surgery for his diabetes and things aren't looking great on that front. T's aunt saw her breast cancer return, with a stage 4 status, and then this past Sunday suffered a minor stroke. T's had some of his own health issues, and it has been hard to watch him deal with those. On top of all of that, we have the wedding planning and more. I just have been feeling so emotionally overwhelmed but everyone says crap like 'be strong' and so I don't show it or share it.

The last few weeks have been enormously hard emotionally as well, dealing with the year anniversary of Laura's death. I had thought it would be easier when we got to a year - that things would sink in. It would still be sad, but maybe we could all really start to heal. Now that I'm a few weeks removed from that day, I am emotionally feeling better, but still very raw.

I had a terrible dream on the anniversary of her death. T and I were on a cruise and there was some emergency that we of course were sure was just precautionary. He runs to go take a look and calls out my name in the most unnerving tone of voice, and I turn from what I'm doing to see that the boat is sinking. Unsurprisingly, my heart sinks and I have that 'holy shit I'm going to die' realization. When I woke up from the combination of the nightmare and my sky-high pain levels, I never had that comforting 'oh oh good, it was all just a horrible dream' feeling. I'm constantly on edge and, if the topic of death or the meaning of life or any of that existential crisis crap should happen to pop up, I'm incredibly sensitive to it - like in the freeze up, panic attack type way. This is the first time I'm really talking about it with anyone, but it's also gotten better as of late for the most part. I sometimes have existential crises, but they're often short in nature (i.e., not even a whole day) so this has been hard to deal with. I'm thankful my nighttime meds are back in force, and I can really sleep throughout the night.

The Friday after, between work and everything else, I had a breakdown the likes of which T has never seen before. I'm sure I cried for like an hour and I felt better afterwards, but damn. It was hard to be that vulnerable and I'd like to avoid it whenever possible... though I didn't mind the nice things he said to cheer me up. I'm lucky I have him for sure.

My pain levels are getting back under control, but my inflammation is not. I'll be switching to Orencia in January/February depending on how long it takes them to prior auth that. I just got all the info in the mail from the company that makes it. I'm nervous, but ready to just move on to something that works and hopefully doesn't make me feel like crap when I take it like the enbrel has been doing lately.

Are you ready for the good news? Me too!

I've been asked to be a part of a panel on juvenile arthritis for our local Arthritis Foundation chapter in February, so I've been doing a lot of research on the transition from childhood care to adulthood and all that fun stuff. Oddly enough, it is fun for me to read all this info. I'll be doing more with that here as well.

As a part of that, I spoke with a pediatrician in Ohio who deals specifically with SJIA/Still's (and MAS). It was a refreshing conversation, and he agreed that there needs to be a focus on how to be a healthy adult for these kids transitioning. He also passed along some medical research to share with my rheumy, and has graciously opened up his brain for me to pick. I'm really quite pleased that he agreed to speak with me.

And I'm a little afraid of what I've just signed on to do, but I have made it a goal to run a 5k in May raising money for the Arthritis National Research Foundation, who donates 91 cents on the dollar to research. They've made some important breakthroughs lately, so I'm excited to help be a part of that (I think? I'm tired haha)! If you'd like to donate to the cause (or join us!), come check it out!

I feel like this totally turned into one of those super annoying Christmas letters, save that I didn't tell you about anyone's goiters or corns or enemas... for now.

Tuesday, December 10, 2013

The Longest Year: Laura Remembered



I don't even know what to say or where to start. How do you celebrate the life of a woman who completely changed yours when she's no longer here, and how do you try to put any of that into words?

I found Laura after I had started blogging about my own experiences. One day I reached out to her to let her know how helpful her blog was and, to my surprise, she responded. We began to talk about our experiences and, while there are some differences, our stories are extremely similar. Those similarities just grew with our friendship. We always kind of just knew how the other was doing, even without talking, because we did the same things when we felt awful. We even got engaged the same year to the most amazing and supportive men I've ever known. I'm biased when it comes to Theron, but not when it comes to Laura's Matt. The two of them are exactly what partners should be, and I hope they both know how much of a difference they've made in the lives of two chronically sick chicks. We were so looking forward to planning our weddings together. I found my wedding dress a few months after she passed and, on a day where you're supposed to cry happy tears, I cried because I knew I couldn't share that , or any aspect of the happiest day of my life, with her.

One of my favorite things we had in common was our sense of humor. Many people get grumpy due to pain, especially when it is chronic and/or severe. Laura was one of the first people I really met who, like me, tried to cheer herself up with humor and never wanted to treat others poorly. She would ask how you were doing, even if she was in the hospital and clearly doing worse. The week before she died, she and I were discussing some pain I was having and she was trying to help me figure out what it was while she was in the hospital with organs failing. Even if she was expressing frustrations with pain, she never seemed to complain. That was part of what alarmed me the weekend before she died - she was talking about how much pain she was in and how nothing was helping. She and Emily from Chronic Curve were discussing the pain and possible ways to deal with it. I knew something was wrong, but I didn't know just how bad it was.

That was Sunday night, and she passed away on Monday. I found out on Tuesday through one of her friends, but in reality I think I already knew - we all did. There are very few deaths that can bring the rheum and spoonie community to their knees, and Laura's was one of them.

As hard as it is to say, there are some good things that have come out of Laura's passing. Out of the ending of her story, so many people have been brought closer together. Emily and I have forged a friendship along with others that include Matt's mum, Many who knew her have taken up activism in her name, and those of us who were already activists have a renewed passion for fighting these diseases in any way we can.
There is nothing I could say that could cover everything she was and continues to be for me. She has been a sister, a confidant, a best friend, therapist, personal motivator, and doctor all in one. She continues to be many of those, despite her physical absence.

I will be forever grateful for the things she gave me, both in life and in death, but especially for her catchphrase that gets me through every day: "Living with Still's is still living."