Lessons from the future past

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.

I love you Humira, but

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 hate this picture

Another tourist in Iceland took this picture of us while we were hiking up to Reykjadalur to see the thermal streams. I’ll be frank and admit that I think I look terrible in this photo. My face is bright red,the weight I’ve put on over the last few years is super apparent, my hiking outfit is functional but unflattering, I had no control over the framing of the picture. And etc and etc and etc. I look at this picture and I fall down the hole of everything that I don’t like about myself. 

So I have to grab a handhold and climb the fuck out of that stupid hole because there are so many reasons to love this picture. 

Let’s list those mothercluckers.

1. This picture was taken in Iceland, and fyi, Iceland is amazing.
2. My body was allowing me to climb up a bunch of steep paths through beautiful scenery to an amazing endpoint.
3. I hiked those paths with my family. 
4. I showed my kid that I can do things. I can do things that are difficult even if my cheeks turn red and breath gets a little lost. I can do it.
5. In that exact moment I was so happy and proud of myself.
6. This picture proves that sometimes I get to beat my condition. Or at least control it.
7. It was such a good, joyful, fun day and I have a million other pictures from it but I’m glad to have this one non selfie of all three of us on the side of mountain having an actual adventure.

So I guess I don’t hate that picture. And that means I can’t hate myself in that picture,or the body I inhabit in it. 

It can be hard to remember sometimes that I’m so much more than what I look like but it’s worth it to remind myself that I am. I just need to do it more often.

This picture i love without reservation. Just wanted to show that those exist too

This is a story about Osvaldo who I will miss

Can I tell you about my best day of 1998? I’d like to tell you about my best day of 1998.
I think it was a Tuesday because I’m pretty sure all my Creative Writing classes at Wayne State were on either Tuesdays or Thursdays.  And I’m reasonably sure that my Intro to Creative Writing class was on a Tuesday.  That doesn’t really matter. I’m just organising my thoughts.
Exactly one week before my best day I had a bad day. I turned in my first short story for my Intro to Creative Writing class and, man, I was an absolute mess about. I was sure my new professor, who had quite clearly told us  that sugar coating was for donuts not writers, was going to hate it.
It was a pretty slight but funny story called Becoming Robert about a girl named Alice who feared she was turning into her exboyfriend after a messy breakup. I didn’t want him to hate it. I was desperate to impress him. On the first day of class he’d told me in his thick Argentine accent that he was already writing a movie about me in his head. I had a lot to live up to.
He saved my story till last and I was losing my mind all through class. I think I participated in the other critiques, I know I chewed my pen the whole way through. I remember asking at the smoke break if my story could be next. He just laughed at me and made me wait.

When we finally got to my story he held up his copy and I could see a million, possibly 2 million, red circles on the first page. I was sure he was going to order me out of the class room and tell me to drop the class. He would make me change my major. I was done. I would just go lay down on Cass Ave and wait to be run over by a car. Instead, he said it was the best story of the week. That he hated one line in the last paragraph and that my abuse of commas was shameful, but otherwise it was a great story.
I’ve had some really good moments in my life, I’m a lucky person in that regard, but that moment remains one of the best. Osvaldo Sabino was one of the best teachers I’ve ever had, and not just because he liked my stories. He knew how to encourage and antagonize in just the right ways. He was a pain in the ass and an absolute wonder in just about equal parts. He was always trying to set me up with cute boys. I needed to live more according to him. And he was always encouraging me to pursue scholarships and opportunities.

And I was just one of many who were lucky enough to know him.
He died unexpectedly on Tuesday. It’s been 16 years since I last saw him in person and I feel like it was just last week that I was sitting around the big round table at Z’s on the corner of Woodward and Warren with him and his partner, Chris Leland, part of a crew of young people passionate about words and stories and saying something real and true.

Thanks for your time and your knowledge, Os.  And the absinthe, too.

Numbah 9. Numbah 9

Yesterday was my 9th humira injection. The side effects are nearly gone now, but I still learned an important lesson.

IMPORTANT LESSON:
Don’t even think about giving youself an injection until that epipen has been out of the stupid fridge for at least 45 minutes.

I talk a big game about how yes, the injection is painful but it’s loads better than the pain of AS but yesterday made me reconsider that sentiment for 15 excruciating seconds. I’m over it now. Mostly.
Maybe.

Ultimately 15 seconds is small change compared to even the edges of pain I had over the weekend. I’m leading a better life than I have in a long time and that’s worth a lot.

I went to Berlin two weekends ago and rode a bicycle around town! And walked up approximately 15 million stairs and played kegelbahn. I went to the V&A last weekend and got to see my kid’s smiley face when he realised we were all going out together instead of just him and his dad. I’m going on a country walk this weekend.
It’s springtime!
Rebirth is everywhere!
Possibility etc

I’m being a little sarcastic because of how I’m not comfortable with genuine emotion. But really, truly things are getting so much better.

#5

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.

 

Put on your wellie boots

Max and I went for a walk in Nunhead  Cemetery today

We even took the uphill path.
He did a wee on a hedge and rattled the locked gates at the chapel.

It was muddy and cold and excellent. We haven’t been able to go exploring there since this summer and I’m really pleased we managed a trip there today.

3rd time’s a charm (knock wood)

I gave myself my third Humira injection yesterday. In the right side of my stomach, in case you were wondering.  For the first time I don’t feel like hell on the day after injection.

I almost don’t know how to process this in my brain.  And I don’t want to get crazy here, but I can’t help wonder if maybe this means I won’t have all the nausea this weekend. 
Fingers are crossed, friends. Fingers are crossed. Toes, too.

Of course it’s totally possible that just by writing all this down I’ve jinxed myself. By lunchtime I might be unable to bend my knees. My sacroiliac joints might be gearing up for the punishment even now.
Who knows? At least things are working at the moment. At least I had an excuse to use the happy Kermit gif. I’m putting a check in the win column for this morning.

Update:
And then, after lunch the dizzy spells hit

Reasons

You might be shocked to hear this, but I don’t actually like talking about being sick very much. I don’t like talking about pain and medicines. It gets boring because it’s something I have to think about all the time. When do I take this medicine? When do I take the other one? Is this the week I need to get a blood test? Can I make it to the bus stop toda
y? Will I be in too much pain to function by the time I get to work? How many official units of alcohol is that glass of wine? Will my liver break if I drink it? Do I look yellow? Oh great, now my knees are hurting again . . . and etc.

It’s neverending and it’s stupid and by the time I’m done thinking of it I’m so annoyed with myself that I don’t want to say it out loud, because that will just take to the next level of boring. And I don’t want to be that person. I don’t want to be that dickhead who drones on and on and on about being sick and how hard her life is and wah wah wah. You know?

But then, last summer, my rheumatologist started talking to me seriously about going on biologics, particularly Humira, because of the fact that I’d started to have trouble with my left eye. I started looking for more information about the drug and about peoples’ experiences with it and my research was largely fruitless. A lot of sites about arthritis are geared towards older people, and even those that are geared towards rheumatoid conditions have so many conditions to cover that it can be hard to find the parts that relate to you.

I’ve since found more, there are Facebook groups you can find if you hunt around, but to be frank Facebook groups often have a higher than average whackadoo count. Like I’m sure they have loads of awesome folks too, but the ones who talk the most are typically the ones who want ALL THE ATTENTION RIGHT NOW ( LOOK AT ME, LOOK AT ME, LOOK AT ME!!!). And honestly, I’m tired enough as it is without having to think about some random character’s drama with their neighbour that may or may not have something to do with their flare.

So I made a decision. I decided to post about this more. And I decided to do that so that other googlers out there like me might find something useful and helpful and possibly a little funny that might help them get to grips with starting a new hopeful sounding but also scary sounding new drug. And it might be nice for them to find out that someone else is in a similarish situation. Because even when you’ve got loads of people who care for and support you it’s still lonely to have a chronic condition. I’m hoping to make it slightly less lonely by talking about it more.

I ordered a medical alert bracelet yesterday.

I’ve had a head cold for the last week and that’s been making me think about medical emergencies and the things I need to remember to tell doctors.
That sounds melodramatic, I know, but it’s not. When you’re taking medication that suppresses your immune system you have to be careful about colds.

Colds can turn into chest infections and chest infections can turn into pneumonia far more quickly than anyone would like. And as someone who used to get chest infections at least once a year up until a couple years ago, I want to avoid ever getting one again. When my scratchy throat showed up last week I wanted to kick everything on earth. I didn’t though. I just started drinking all the fluids and taking hot baths and blowing my nose every 5 seconds. And washing my hands every 3 seconds.

I’m very serious about clean hands these days.
This was my first cold since starting either methotrexate or Humira. If it had turned into a proper infection it would have stopped me from taking both of these medications until 14 days after my last antibiotic.  At this point that would have meant starting over from scratch. I’m not really interested in doing that right now.
Luckily (knock wood), It looks like I’ve avoided that.

You might find yourself thinking, Carolyn, these drugs sound like more hassle than they’re worth what with the exhaustion and the nausea and the itchy scalp and the dangerous head colds. Is it really worth it?

To which I would say to you, yes. Absolutely.  The exhaustion, nausea and itchy scalp should all fade as my body gets used to this new regime, hopefully within the next 10 weeks or so. In the meantime,  do you know what I did today? I walked a half mile across the park to the bus stop rather than taking one bus 4 measly stops to get to another bus.
This might not sound like much so let me reframe it.
For the first time in over a year I was able to walk a half mile. I did not have to stop or grit my teeth.  My
feet did not swell to twice their normal size. I just walked across the park. There was still some pain, but it was tolerable, almost negligible, compared to even 8 weeks ago.
That’s amazing. That’s worth having to order a medical alert bracelet and wash my hands like Howard Hughes.
I’m walking a fine line between nervy fear and this weird aggressive optimism lately. Its a strange mental place to inhabit but it’s worth it if I can keep walking across the park.