Meds, oops

June 30, 2015

1mgsSo this is what it looks like when you run out of 5 mg tablets of prednisone. Luckily I still had enough 1mg pills, but this is not really my preferred way of doing things. Sometimes it’s just hard to stay on top of all of this stuff, you know? Since this photo was taken, I did manage to get a refill for the 5’s. Whew.

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

rheumatoid-arthritis-bestGood news! My blog was named as one of Healthline‘s Best Rheumatoid Arthritis Blogs of 2015. I’m slide #4 on the list: http://www.healthline.com/health-slideshow/best-rheumatoid-arthritis-blogs#4

Thank you so much to everyone who reads my blog and supports me and what I do! I’m forever grateful for the wonderful friends I’ve met through my little blog and for being part of the online RA and patient advocacy communities.

HealtheVoices advocates!

April 24, 2015

image003

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)

Hello!

I’m in Brooklyn, New York right now, trying to figure out what the hell I’m doing. And why I’m doing it again. I had a really awful day yesterday, mostly because of my health insurance company in Minnesota admitting that they gave me completely WRONG information regarding me having health coverage here in New York City. It’s a long story and I’m too tired to go into it now, but basically I’m stranded here without health care. And my rheumatologist in Minneapolis is in China now for two weeks, so it’s pretty difficult to reach him. I’m working with his nurse though. Hopefully another doctor can help me.

So, ah, just saying hi from New York. I’m alive…barely! ha ha. Prayers, good thoughts, etc, are very welcome right now. I need them. I was crying my eyes out for hours yesterday. :(

More soon!

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