06 December 2024

Christmas Prep

 This year, I've had a hard time feeling grounded and settled. Part of it is that my healthcare has been a roller coaster (more on that below) and part of it has been the state of US politics. Both have had me feeling like I'm spiraling.

After being diagnosed with Axial Spondyloarthritis with a possible combination with Rheumatoid Arthritis back in April, I had a series of medicine trials to see if they'd help. Nothing did. I was in pain all the time. It wasn't severe all the time, but it was THERE. Sometimes it was really bad. All in all, it was pretty miserable.

Finally, my doctor decided to proceed with twice-monthly injections of the generic brand of Humira. I was concerned about the cost - Humira itself is over $8000 a month, and the generic isn't a whole lot cheaper. My doctor told me about cost-reducing programs that I could qualify for and reduce my cost to nothing. This begs the question of why it's so expensive in the first place, but I digress.

My insurance denied coverage of the generic, but said they'd approve on-brand Humira. This makes no sense, unless you look at it like the insurance company probably gets a pretty good chunk of a kickback with brand name drugs and not so much with generics. My doctor says it's all a big scam and I'm pretty inclined to agree.

I started the Humira and after about 8 weeks, I started noticing a big difference. I wasn't hurting when I woke up in the mornings, the nodules that had become quite large in my hand joints were shrinking, and I was able to stand for longer periods of time without my hip joints seizing up. I was ecstatic! Finally something was working, I had answers, and I was on the way to being able to live a more normal life.

Enter new job, which came with new insurance. I was able to get one last refill under my old insurance, and then the waiting game started with my new job. I knew I wouldn't be covered until October 1, so I'd made arrangements with my doctor to get a sample of the generic medicine to tide me over until I could get the new insurance in place. I tried for most of September to get in touch with someone who could get me my insurance information so that I could get the preauthorization process started. I wasn't having any luck at all. I finally emailed the HR director at my new job, and almost immediately got a pretty nasty response back and I should have contacted her to begin with, she could have helped me, blah blah blah. I didn't contact her initially, because how was I supposed to know that she had my insurance information?! I don't feel like that's a given. And every other interaction I've had with her has been not so positive. She's been very snarky and pretty nasty with me with questions that I've had. Hello, sorry I just changed jobs and am trying to familiarize myself with your procedures. OF COURSE I HAVE QUESTIONS.

Anyway, with that information, my doctor was able to get the process started to get preauthorization. Surprisingly, it came back pretty quickly and was approved. I was relieved. I could continue my medication without a whole lot of interruption. 

HAH

Not so much. I was able to get one month of Humira, and then when I went to refill on time, it was denied. The pharmacy (in Orlando, Florida) said that my insurance had said I already refilled for the month. I most definitely hadn't. Long story short, I won't be able to get my medication again until just before Christmas, so now I've been off for 2 months. It took that long to feel any relief when I first started, and I've regressed a lot. Those hand nodules are coming back, and it's been harder to use my hands. I can't stand for longer than a few minutes at a time, my joints are creaky and loud, and I wake up in pain every single morning. It takes almost an hour for things to feel better and for me to get going. UGH.

Add in the stress of a super contentious country right now, and faced with more of the same for the next four years, I was just done. I knew I needed to do something to bring hope into my life again, because I sure wasn't feeling it.

I decided to put up my Christmas decor super early (before Halloween O_O) because it always makes me feel centered and calm. It really has done the trick this year. Though I'm still going through the medical drama and I don't feel a whole lot of hope in the US right now, I *do* feel it in my home. Christmas has that effect on me and I love it.

My apartment smells like cinnamon, my tree is glorious this year, the farmhouse charm is all over the place, and I feel happy here. I love Christmas more than any other time and I'm happy to bring it around early this year.

Here's to a more hopeful future.

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