RAankleHere is a photo of last Friday’s very swollen ankles–especially the right one. Ouch. I have to say, the heat and humidity of summer in NYC is quickly becoming my enemy. Sitting at a desk all day at a temp job doesn’t help the swollen feet/ankles problem either. Luckily there is this wonderful little invention called ICE. After sitting on this step for a few minutes after work, dreading the rush hour subway ride back to Brooklyn from crazy Midtown, I did finally hoist myself up and limp down into the subway. As soon as I got home you can be sure that I strapped my ice pack onto that annoying ankle. I posted this photo on Facebook not long after I took it, complaining in a half-joking manner about how much I missed my pre-RA cute and skinny ankles (ankle bones even visible back then!). My cousin wrote back, “At least you’re wearing cute pants!” Yes, that’s true. Cute pants do help. Whatever makes things a little bit better, right?

So have a great day, stay cool, and wear some cute pants! Hang in there, everybody. Summer can be tough.

For a while I was trying to cross-post some of the articles I’ve written for Rheumatoidarthritis.net but I realize I haven’t done that lately. So, if you’re interested, here’s a fairly recent one that I like:

“JRA vs RA: Caught in the Lonely Gap”

It’s about being diagnosed with RA at age 18, and sort of teetering on the edge of being a child or adult patient and the issues that came with that. Loneliness is a major “side effect” of having this often misunderstood disease, and I believe it’s even worse when you’re young and living with it.

Ice time

May 3, 2015

IMG_4356Walking miles everyday + climbing NYC subway stairs + stress = angry ankles/feet

Flare

February 8, 2015

painpainpain

February, 2015

 

proudpain

I saw this written in graffiti on the side of a building one day when I was riding the subway in November. I wished I could’ve taken a photo of the original, but instead I grabbed my little notebook out of my purse and scrawled this down quickly.

To whomever wrote this quote, I thank you. It’s beautiful, much appreciated, and often times quite needed.

Pain without pain relief

February 3, 2015

I’ve been having a flare-up for the last three days or so in both feet and ankles, hands, and my right wrist. My shoulder too, I think (sometimes it’s so hard to tell which pain is which). And, in great frustration (and pain), I’m out of pain medication. Once again these new, stricter FDA regulations on narcotics are causing me additional and unnecessary suffering. And I know I’m not the only one.

So, sorry for complaining, but I think this issue needs to be talked about. I’d also like to point out that if I had easier access to pain treatment (which is obviously legitimate and not abusive), I would not be missing work this week. I’m losing. My bank account is losing. Society/the economy is losing. And my sweet kindergarten students are losing their teacher.

Here’s a good opinion piece I read today from The Boston Globe by Donald N.S. Unger:

“My Chronic Pain Isn’t A Crime”

This hits home, unfortunately.

Actemra (tocilizumab)

January 31, 2015

infusion3

Receiving my Actemra infusion, 1/26/15

 

Monday, January 26, I had my first Actemra infusion. I’m not sure how to feel or react to this, exactly. Hooray? Congrats to me? Holy shit? THIS BETTER WORK? In any case, it’s a new chapter in my RA life. Actemra is now the fifth biologic drug I’ve tried since I first began biologic injections/infusions, starting with Enbrel in autumn 2002. I can’t believe I’ve been on them that long! Luckily (I’ve been very lucky) I haven’t had problems with side effects with any of these still fairly new medications.

Before beginning Actemra on Monday, I received bi-monthly Remicade infusions for about seven years (for the second time). I had been on Remicade once before from approximately 2004-2007, then I switched to Humira injections because I moved to France briefly to teach English (my doctor and I decided it would be easier to do injections in a foreign country rather than trying to sort out getting infusions while abroad). When I returned home to Minneapolis from France, I switched to monthly infusions of Orencia, basically because I really hated giving myself shots; I never got used to doing it. I can’t remember how long I stayed on Orencia, but my rheumatologist and I decided that if I was going to stick with I.V. infusions, Remicade seemed to work a bit better for me. So after a brief time on Orencia, back to Remicade it was.

A few months ago my rheumatologist and I finally decided that it was time to change my RA treatment and try a new biologic. Remicade just didn’t seem to be working that well anymore. I was on prednisone more often than I wasn’t due to frequent and stubborn flare-ups. One of our main goals for my treatment has always been to stay off of prednisone. And now that I try to remember, I think it’s been at least a few years since I’ve been off of it consistently for more than a few months at a time.

So! While starting a new medication can be scary and worrying, I’m also trying to be hopeful and positive that Actemra will be a good turning point in helping to stabilize my RA and maybe even put me into “remission” for the first time. I’m so ready to have a good long stretch of significantly decreased pain and flares and especially a nice lengthy period of NO PREDNISONE.

I hope this works.

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