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.

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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.

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#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.

 

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Put on your wellie boots

Max and I went for a walk in Nunhead  Cemetery today

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

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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.

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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.

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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
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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 neveregiphynding 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 giphy1if 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.

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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 gettAnjoWashHands2ing 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 burnsnot 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.

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