I am not a reliable narrator

I’m turning 40 in just over a month. That’s okay. I’m not feeling crazy or mad about it. At least not yet. Aging is natural and my life is like 95% good. I have a good family, plenty of knitting to do, books to read, places to see, and a couple solid guys in my life to love. My blessings are many.

What I am feeling, however, and I know this will come as a shock to you, dear reader, is melancholy.

Two summers ago my friend Dana died the month before her 40th birthday. And I keep thinking, in this month leading up to my birthday, about how Dana used to give me advice from 2 years in the future.

EG “You can’t know this now, Carolyn, because you are much too young, but when you’re 27, you’ll know not to tighten all the screws on your Ikea furniture until everything is put together.” 

That honestly stands as some of the best advice I’ve ever received in my entire life.

By the end of her too-short life, she had become a cautionary tale and that is still really hard for me to reconcile with the Dana I knew. The Dana who was full of talent and lessons. The brilliant shining Dana I knew and shared a home with doesn’t match the lost, unwell Dana she became.

I want to have something clever to say about addiction and death and the holes that get left behind in our lives. I want to make something meaningful out of those holes. These patched up bits inside me have to be there for some purpose, don’t they? Except I don’t think I believe that. We survive these losses, these sorrows, because we have to. We don’t learn any lessons except how to go on despite the presence of sinkholes that sneak up on us when we least expect them.

That’s right, an episode of RuPaul’s Drag Race might make you cry when two glamorous drag queens talk about how they were able to conquer their addictions and an anger will well up in you at the absolute unfairness of it all. The fucking injustice! Not that they should have lost their battles, but that she couldn’t come out victorious too. That there wasn’t enough victory to go around.

Maybe as I get older I’ll find out some more answers. I’ll have to do it without the aid of my old friend though. At least I’ll have well built flat pack furniture and so many good memories to help keep the hard ones in balance on the days when they sneak up on me.

We need to talk. My next injection is on Tuesday and right now my sacroiliac joints feel like they’re coated in painful glue. It’s not cool to crap out on me with 4.5 days left to go.

And about this fatigue lately. Is that you, the methotrexate or the AS? Or are the three of you working on some dastardly plan together? I can handle the normal tired but falling asleep on the bus isn’t cool. Same with yawning so hard it feels like my jaw might crack.

So if the three of you could settle down and work together a little more I’d really appreciate it. I have a dogs fancy dress competition to go to and friends to see. 

You’re still great, Humira. I love your new formula and the way you get my immune system to chill out most of the time but if you could make a little more effort over the next few days I’d really appreciate it. I don’t want to miss the dogs in fancy dress again this year. 
Xoxo

Carolyn

I’m taking my 5th shot this evening. After the dizzy spells that followed #3 I decided to shift my injection time to later in the day and that seems to have improved things a good bit.  I still get the exhaustion but the other Humira specific side effects are much reduced. The day after taking my methotrexate the week of my injection is still rough though.

While these meds have reduced my pain by a lot I’m still dealing with regular pain. It’s actually hard for me to remember a time before pain. It’s just part of life now and even though the reduction is great it is still exhausting to hurt all the time and to wonder what will hurt next. This past weekend has seen the arrival of new stiffness in my back. From my SI joints up into my neck. It’s weird and unpleasant. I spent the weekend feeling like I just couldn’t stretch enough and worrying (without any evidence or real reason)about fused vertebrae.

But I give myself that injection tonight and hopefully that will help. I also have to try and avoid the snot that is currently covering approximately 95% of my child’s face.

And tomorrow I get to check out an exercise class conducted by the local branch of the NASS specifically for people with Ankylosing Spondylitis and I’m pretty excited about that. I’m trying to find better coping tools lately and i think this will be a good one. I’ve also been trying to do more yoga at home. I’m not ready to go back to a regular class but a friend recently shared and interview with Dana Falsetti that really struck a cord with me. As a result I subscribed to her series of classes and have been working on the first 2 videos and am trying to get back some control of my body. I feel like even a little control is better than none.

So things are positive, there is improvement. There is also still pain though. There may always be pain, the main goal right now is continuing to reduce it.