Tuesday, February 28, 2017

A Flare so Bright It Lit the Sludge

Pain takes up a lot of room in your head.

I will forever be grateful to the social worker from The Arthritis Society who told me that at a time when I thought I was losing my mind. I wasn’t. I was just having a lot of pain and it messed with my ability to focus and remember.

I’ve had a little visit back in that place for a while. The last time I took my trusty biologic was just after Christmas and then croup happened. Then there was a month of working on healing my voice and by the end of January, my SI joints were starting to get unhappy. Earlier this month, I started back with a smaller dose, but left over side effects from four weeks of prednisone made my biologic side effects go insane — GERD and a hysterical hiatal hernia that made it feel as if I was having a heart attack. So we backed off a bit on Humira.

And then came the Fibro flare. I couldn’t quite figure out if it was a genuine Fibro flare or it was a Fibro flare triggered by encroaching RA, but it didn’t really matter. The intense pain mattered. As did the thick brain fog. I couldn’t think, I couldn’t focus, I felt very much not like me. I did push through and write an article for HealthCentral, but it took me three days. In the end, there was crying. Not because of the work, but because of how hard it was to get through the day.  

Pain like that is as bright as lightning and as loud as thunder. Pain like that invades your mind and occupies it as it enthusiastically as the Nazis did Denmark during World War II. You might’ve had plans, but those plans are done and you better adapt and quick.

But how do you adapt to the kind of pain and brain fog that take up so much room that taking a shower and getting dressed exhausts you? Instead of taking care of yourself and the cat, doing some work, and being present in the lives of the people you love, you curl up like a hedgehog and focus on the next step, the next minute, the next breath.

Because that’s all there is — the fog is so close that you can’t see any further. And the pain is so intense that it is impossible to focus on anything else.

You can’t tell your work or your family when you will be present again. You hope it’s tomorrow, but wake up in the exact same place and everything gets delayed again. And no matter how many times you’ve experienced this, every time it feels like it is the end of the world. Your brain may be telling you that you’ve been here before, you’ve gotten through it before, but it feels so dire, so urgent, so terrible that you are convinced there is no way out. And because of the fog and the pain, it takes a long time to remember the coping techniques you used before.

I got a steroid shot a week ago and within 24 hours, I’d gotten my brain back and my stomach had started to simmer down to its usual manageable state of upset. The pain was continuing, though, which was significantly less fun. I have developed side effects to my NSAID, so instead had to dive into the Big Drugs. Which mess with my stomach. Nonetheless, I got my Humira shot yesterday, relying on the steroid shot to prevent the Big Bad from happening in terms of side effects. So far, so good.

And within hours of getting my biologic, the pain levels abated. They are by no means down to anything reasonable, but there was a significant effect. So it was a Fibro flare triggered by encroaching RA. Good to know.

Living with these conditions is a balancing act. They interact with each other, swirling in and around and through, blurring the edges so it’s hard to tell where one begins and the other ends. And what is usually milder side effects or co-morbidities flare up, as well, the minute the balance skews even just a little.

So I’m working on achieving the balance again, still feeling quite wobbly and tired. But now I have hope that I will get there.

Monday, February 27, 2017

In Which I Appear on the ChronicSex Podcast

Most of the time, what I do involves sitting alone in front of my computer and writing down my thoughts, then posting them somewhere and and you read them and sometimes leave a comment. I like this. It suits my introverted nature, yet at the same time it is a two-way conversation.

But one should stretch, no? Get out of the comfort zone, do something new and hopefully exciting.

Several months ago, the lovely Kirsten Schultz interviewed me for the ChronicSex podcast and my episode it live! In it, we talk about arthritis and sex, the lack of guidance from medical professionals about what to do and what to avoid, the awkwardness of asking for advice about sex, that little bit about politics, and there's a whole lot of laughing

It was a terrific experience — Kirsten and I clicked on lying quite a while ago, met in person in Toronto last year and that confirmed the click. We talked for over an hour for the podcast and it went by in no time.

You can find the ChronicSex podcast on iTunes, SoundCloud and in other places. Check out more info about this episode and ChronicSex.

Thank you so much for hosting me, Kirsten!

Thursday, February 23, 2017

Body Image and Chronic Illness: How to Be Bodacious

Chronic illness can seriously mess with your body image, leaving you feeling disconnected and far from attractive. In my new post for Mango Health I look at ways to get back to feeling bodacious:

"Where did the vibrant old you go? The person who felt at home in her own skin, who laughed and danced and took initiative? Living with a chronic illness is like living with a voracious monster that eats everything in sight: your energy, physical ability, social life, self-worth. And in some ways most devastating of all, your belief in your own attractiveness.

But just as chronic illness can take, it can also give you a unique opportunity to rebuild. To accept and love yourself even more than you did before and to become fully realized as a strong, confident person. Here are a few ways you can become bodacious.

Save your sweatsAh, sweats. They have the comfort of pyjamas and let you leave the house without looking entirely indecent. But they also make you feel invisible and decidedly unsexy. My recommendation is to save sweats only for the very worst days. Skinny jeans and form-fitting tops may be too uncomfortable for everyday wear, but you can still develop a different style."

Read the rest of the tips on becoming bodacious on the Mango Health blog.

Oscar Thoughts

My mother has abandoned me. 

Last night, she notified me that she had no intention of watching the Academy Awards with me on Sunday. And I don’t really blame her, because let’s face it, the Oscars are usually deadly dull. What makes it fun is watching it with someone and sharing snarky/admiring comments about the clothes, the speeches, and the presenters.

Every now and again, they do something that livens things up. And then they go back to the same old thing. Take last year. There were one, maybe two of the major awards at the very beginning, followed by two hours of interminable dullness, and then they rushed the rest of the major rewards into the last 20 minutes. Who was responsible for that abomination?

Yet I watch every year in the hope of something unique, entertaining happening, and of course of my favourite movies winning. To that end, I spend some time watching all the Best Movie nominees before the big night. Oddly enough, I also develop opinions about them. Odder still (ha!), I intend to share them with you.

What? It’s perfect blog fodder for a week with excessive brain fog.

Arrival. Aliens land and a linguistics professor is enlisted to try making sense of the language. I’m not going to say anything else about it, because it would ruin the plot, the surprise, and the experience. It is thought-provoking, heartbreaking, and uplifting, all at the same time. I loved it.

Fences. Denzel Washington in a tour de force performance that highlights the joy of talking. Unfortunately, I experienced a severe immigrant moment and couldn’t really understand the accents the characters used. I’m normally very good with accents. This was very frustrating. It looked good, though.

Hacksaw Ridge. Based on true events of a conscientious objector who joined the Army in World War II. The story itself is amazing and there are moments of intense action, as well as quiet heroism. Mel Gibson returns to direct a loving paean to the violence and gore of war.

Hell or High Water. A Western and a thriller, this is the story of two brothers who are engaging in a number of bank robberies, and the man who wants to find them. It has a quiet intensity and takes the time to tell you the reason behind the robberies. Again, I ran aground on accents. That low drawl of rural Texas was hard to understand for these Danish ears.

Hidden Figures. The based-in-fact story of the black female “computers” at NASA that helped get the space program develop. Fantastic story of both the space program and civil rights. Brilliant performances by all. I loved this movie.

La La Land. Skinny, white millennials sing and dance their way to adulthood. Gorgeous movie, wonderful eye candy, lovely music, but I kept getting distracted by wanting to feed Emma Stone a sandwich. And by there were only a handful of non-white characters (and that’s counting the extras) and maybe one or two people over the age of 30. Maybe it’s that is been built up so much, but I also sort of…

Lion. Didn’t see it. Do you know how it is?

Manchester by the Sea. Lee is a very quiet handyman in Boston who receives a call to come home after a death in the family. Gradually, we find out why he is so quiet and sad, and see his relationship to family and his past in Manchester. The movie is compelling and yes, quiet, but really gets under your skin.

Moonlight. A story of growing up black and gay in South Florida. And about love, abandonment, the impact of drugs on families (jn more ways than one), bullying, hope, and so much more. This is a fantastic movie, brilliantly written, directed, photographed, and edited. Not the only movie I loved, but it may be the one that deserves getting the award.
What did you think of these movies? Who deserves getting the Oscar?

Tuesday, February 21, 2017

Dealing with Nausea in Chronic Illness

I have battled nausea for as long as I've had RA, so why not write what you know? My new post for HealthCentral looks at how to cope with nausea related to chronic illness:

"Nausea is a particularly nasty symptom. Your stomach’s on a rollercoaster and you’re sure you’re going to throw up. It can occur as a precursor to vomiting, or on its own. Generally, it can happen when you have stomach flu, motion sickness, or are pregnant. But for people with chronic illness, it may be part of their every day."

See the rest of the slideshow with lots of tips on how to deal with nausea on HealthCentral.