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.

HealtheVoices advocates!

April 24, 2015

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HealtheVoices 2015 Conference – patient advocates! Jersey City, NJ, April 18, 2015

And in good news…here’s an awesome group photo of us HealtheVoices patient/health advocates with a gorgeous view of Manhattan in the background. What an inspiring group of people! Can you spot me?

(Hint, I’m short)

HealtheVoices Conference!

April 20, 2015

I just attended an incredible conference in Jersey City, NJ comprised of health bloggers and advocates from all over the country, who all suffer from different chronic diseases. Wow! What a weekend! I’m sad it’s over, but so happy to have been a part of it. I have a lot of blogging and photo updating to do from this weekend (and in general), and I will post more here ASAP about the conference. I just want to write a little something right now before I head to my next adventure….which is MOVING TO BROOKLYN, NEW YORK! Yikes! More on that soon, too.

If you’re interested, you can look up #HealtheVoices15 on Twitter for lots of photos and posts about the conference. Health advocates coming together with experience that spans across MANY diseases and conditions is a pretty powerful thing.

$(*#*fkhd#$mw*$!!!!

September 23, 2014

Apparently everyone in the health care field is incompetent today. About to go punch out someone at Target pharmacy right now.

That’s all.

GOOD NEWS

July 16, 2014

Good, exciting things are starting to happen just recently! But I’m going to leave it at that until things are confirmed. One of those good things I will say right now is that I’m down to taking 10 mg of prednisone. I’ve been SLOWLY tapering down from 30 mg since April. This makes me very happy and I hope I can continue tapering each week until I’m off of this dreadful medication.

Hooray, 10 mg! Sometimes it’s slowly, step by step, that things get better. And I always must keep reminding myself of this, especially during those times when it feels like nothing will be better again.

Hold onto hope.

On the mend

July 10, 2014

So I’ve been M.I.A. on here for quite awhile, as you might have noticed. Unfortunately I’ve been dealing with all kinds of exhausting craziness: RA flare-up, additional health problems/illnesses, family stress. BUT! I’m finally feeling better and that I’m ready to get back to working on my writing and photography work (among other projects and things).

If you’re interested in reading more of an update (and more whining about health crap), here’s my recent post on RheumatoidArthritis.net: “Sick When Sick”

I’m happy to be on my way back!

Thanks for reading and sticking with me.

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