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.

NOT invisible

April 28, 2014

You know what, I do have some good news to share–I’m not totally consumed with whining and venting about this miserable flare-up that’s going on now (thank God for that, right?).

THE GOOD NEWS: I recently got assigned to write another article for Arthritis Self-Management magazine! The topic is “invisible illnesses.” I’ll be interviewing people who have different kinds of invisible illnesses, not just RA, and how having such a disease affects their lives–and the lives of others around them (family, friends, coworkers, employers, etc.). This “invisible illness” topic is something that’s really important to me not only because it personally affects my life in huge ways, but I know that so many other people are stuck in difficult situations because of it too.

How do you get people to understand what you’re going through when you look “normal” on the outside? How do you avoid being discriminated against because of your illness if you do decide to open up about it with others? How do you find a balance that works? Either people don’t take you and your illness seriously enough, or they judge you because of it. It’s a fine line and I think that many people don’t know how to deal with it–neither the person with the disease nor the caregiver/friend/partner/family member.

For the past 16 years, my default mode has mostly been keeping my mouth shut about my disease while trying to continue pushing forward, and living as normal a life as possible. The danger with this approach is it can lead to intense feelings of isolation and frustration, which I often do feel. I don’t know. Despite living with RA for so many years, I don’t have the answers or feel like I know what I’m doing most of the time. But I’m looking forward to talking with others who also understand what it’s like living with an invisible illness and hearing about their experiences. I’m also excited to be able to spread more awareness about this issue. There is a weird stigma and sense of taboo attached to talking about chronic illnesses, and especially chronic pain. It’s frightening and uncomfortable and awkward, but it’s a real problem. There are too many people out there whose pain and struggles are still invisible.

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